Introduction

Around the globe, more than 110 million people live with the consequences of a stroke, including around 500,000 in Canada only [1, 2]. Stroke is a major cause of disability worldwide [1], as it can restrict participation in all activities of daily living [3, 4]. Stroke results in impairments (e.g., hemiparesis, cognitive impairment, aphasia) which can affect ones interactions with their environment (e.g., physical barriers, burden on caregivers) and restrict satisfactory participation in daily activities including sexuality [5].

Those living with the effects of stroke need quality services that are in alignment with stroke rehabilitation guidelines including specific recommendations on sexuality with the aim to promote their recovery and participation. Sexuality has been defined by the World Health Organization as “…a central aspect of being human throughout life [that] encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction. Sexuality is experienced and expressed in thoughts, fantasies, desires, beliefs, attitudes, values, behaviours, practices, roles and relationships” [6, p. 5].

Stroke rehabilitation guidelines from several countries recommend that sexuality be addressed as part of stroke rehabilitation [7,8,9]. Although up to 78% of people who sustained a stroke present sexual difficulties [10] and that sexuality is an important concern for post-stroke individuals [11], less than 20% have the opportunity to address sexuality as part of their rehabilitation, from acute care to their return in the community [12,13,14]. Moreover, studies have shown that few clinicians include sexuality in their regular practice, even when they consider sexuality to be an important aspect of living [15, 16]. Considering that sexual difficulties and dissatisfaction have been related to higher risks of depression and lower quality of life [17, 18], this gap between recommendations and actual practices needs to be addressed by improving the quality of sexual rehabilitation services for people who sustained a stroke.

Recently, Grenier-Genest and Courtois [19] adapted a three-level model for sexual post-stroke rehabilitation, initially created for individuals presenting multiple sclerosis [20]. The aim is to deepen our understanding of the multiple impacts that a stroke can have on sexuality. According to this model, sexuality can be affected by the primary (e.g., severity of the stroke), secondary (e.g., incontinence, shoulder pain, fatigue) and tertiary impacts (e.g., anxiety, depression, change in partner’s role) [19] effects of stroke. It is thus imperative that patients are provided evidence-based sexuality rehabilitation. A recent systematic review [21] found benefits of carrying out sexual rehabilitation using an interdisciplinary approach for people who sustained a stroke, which included specific skills development [22], pelvic floor muscle training [23] and education [24, 25]. Moreover, this review suggested a need for more robust studies in the field of sexual rehabilitation, considering that only four randomized controlled trials were found in the literature [21].

However, despite all that is known regarding the importance of addressing sexuality in stroke rehabilitation, multiple barriers such as a perceived lack of knowledge and skills and/or comfort on the subject matter, fear of opening a can of worms and insufficient resources may prevent clinicians from integrating sexuality in their practice [16, 26, 27]. Moreover, past studies have shown that barriers at the organizational (e.g., resources) and systems (e.g., policies) levels can negatively affect compliance with guidelines, whether related to sexuality or to any other topic [28]. Nonetheless, these studies on the factors that influence sexuality-related clinical practices did not improve services in stroke rehabilitation context [14, 16, 29, 30].

To our knowledge, only two implementation studies of sexuality-related services in stroke rehabilitation have been conducted to date [13, 31]. This scarcity of research in this area could be linked to previous studies having insufficiently described the nature of the barriers encountered by clinicians and other stakeholders involved in stroke rehabilitation and suboptimal operationalization of recommendations in practice. There is a need to better understand the breadth of factors that influence provision of post-stroke sexual rehabilitation services so that evidence-informed interventions can be developed, implemented and tested. Ultimately this could lead to positive and lasting changes in the delivery of sexual rehabilitation services to people living with the devastating effects of stroke.

Objectives

This study aimed to: (1) understand the factors influencing the provision of sexuality-related post-stroke rehabilitation services by clinicians in the province of Quebec, Canada; and (2) explore strategies to improve post-stroke rehabilitation services with stakeholders (clinicians, managers and an individual who experienced post-stroke rehabilitation services).

Materials and methods

Design

This qualitative study is the first part of a larger project aiming to co-design a multifactorial program for improving the provision of post-stroke sexual rehabilitation services using the six steps of the intervention mapping approach developed by Bartholomew et al. [32]. In the present study, attention was given to the first step of the Intervention Mapping, namely to “Conduct a needs assessment or problem analysis”; the focus was on both aspects of step 1: The first objective focused on understanding the factors leading to the lack of sexual rehabilitation services (i.e., problem analysis). The second objective explored stakeholders’ needs and perceptions regarding sexual rehabilitation service provision (i.e., needs assessment).

The methods used in this study and the rationale for their use will be succinctly described below. More details are provided in the published research protocol paper [33]. The development of this qualitative study was also based on the Consolidated criteria for reporting qualitative research—COREQ [34].

Overarching Approach and Theoretical Framework

This study was conducted using an integrated knowledge translation approach (IKT). The main premise of IKT is that by including representatives of key stakeholder groups throughout the study is more likely to produce relevant and actionable results by end users [35, 36].

We opted to use co-design methods as these can (1) promote mutual understanding among stakeholders participating in the research project and (2) facilitate collaborative work. Co-design methodology promotes conversations and collaborative and creative thinking between participants [33], and allows for exploration of alternative strategies such as projective methods or visual means [37,38,39]. Data collection and analysis consisted of using a combination of co-design methods, including an adapted version of the LEGO® Serious Play® method [33, 40]. The LEGO® Serious Play® method [33, 40] consists in asking participants to create a LEGO® model that represents their answer to a question or problem that has been posed to them. The time spent creating the model, presenting it to the rest of the group and exchanging regarding the different models is expected to lead to deeper conversations and better understanding between participants [33, 40]. This was designed to provide a more holistic understanding of the facilitators and barriers to implementation of sexuality-oriented services, and therefore led to realistic strategies to address the identified barriers.

We used the Theoretical Domains Framework (TDF) to orient the collection and analysis of the qualitative data [41, 42]. The TDF was created by combining 33 theories and empirically tested and can support the analysis of the individual and environmental factors that influence behaviour change. The factors are organised into 14 domains: Knowledge, Skills, Social/Professional Role and Identity, Beliefs about Capabilities, Optimism, Beliefs about Consequences, Reinforcement, Intentions, Goals, Memory, Attention and Decision Processes, Environmental Context and Resources, Social Influences, Emotions, and Behavioural Regulation.

Finally, the Capability, Opportunity, Motivation and Behaviour (COM-B) system and the Behaviour Change Wheel [43] have been respectively used to categorize the domains and related influencing factors and to categorize strategies. The COM-B system supports the understanding of behaviour (herein, sexual rehabilitation practices) by considering the mindful and automatic individual-level influences (Capability and Motivation) and those stemming from their environment (Opportunity) and can be used in conjunction with the TDF [44] to study behavior change and to design interventions to promote uptake of best practices [43]. Throughout the study, the components of the COM-B system [43] will be presented in the following order for coherence between individual and environmental factors: Capability, Motivation and Opportunity. The BCW suggests nine categories of intervention: Education, Persuasion, Incentivization, Coercion, Training, Enablement, Modelling, Environmental Restructuring and Restrictions [43].

Sampling and Recruitment

To gather a variety of perspectives, we recruited stakeholders representing clinical practice, management, coordination of clinical services, and people with lived experience from the five largest organizations providing stroke rehabilitation services in the province of Quebec (Canada), which acted as partner organizations.

To be included in the study, participants had to be a practicing healthcare professional (in any profession); a coordinator of clinical services; managers with a minimum of one year of experience in stroke rehabilitation (either inpatient rehabilitation, early supported discharge or outpatient rehabilitation). The person who sustained a stroke needed to be at least 1-year post-stroke, to have experienced inpatient and outpatient stroke rehabilitation and to be able to participate in group discussions. Clinicians were recruited via an email sent by their manager. The manager, coordinators and person with lived experience of stroke rehabilitation were recruited through the research team’s professional network. Once participants agreed to participate in the study, they were assigned to the Advisory group or to one of the two LEGO® groups.

Data Collection

All data collection activities were conducted in groups, via Zoom and with two experienced facilitators. Advisory group meetings were conducted using focus group methodology to obtain an overview of the factors that influence sexual rehabilitation and the possible strategies that can be implemented to support evidence based sexual rehabilitation [45]. To orient the discussions, the facilitators used an interview guide based on the 14 domains of the TDF [41] and began with the following overarching question: “What do you think explains why sexuality is poorly addressed in stroke rehabilitation?”.

The two LEGO® groups were conducted using the same activities, summarized in Table 1 and described in detail elsewhere [33]. The discussions in each group were recorded and transcribed verbatim. Participants in the LEGO® groups were asked to take pictures of their LEGO® models after each activity and to send them to the research team. Each verbatim was uploaded on the QDA Miner Software to support analysis.

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