Introduction
Motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS), is a neurodegenerative disease, which is ultimately fatal (Atkins et al. Reference Atkins, Brown and Leigh2010; Kiernan et al. Reference Kiernan, Vucic and Cheah2011; Leigh et al. Reference Leigh, Abrahams and Al-Chalabi2003). MND has a sudden onset, usually affecting both male and female adults between 40 and 70 years of age, and has a continual deterioration. Individuals with MND develop complex and disabling symptoms, such as progressive physical disability, and cognitive and emotional changes (Atkins et al. Reference Atkins, Brown and Leigh2010; Flemming et al. Reference Flemming, Turner and Bolsher2020; Kiernan et al. Reference Kiernan, Vucic and Cheah2011; Leigh et al. Reference Leigh, Abrahams and Al-Chalabi2003).
Partners of individuals with neurological conditions, particularly MND, face unique challenges due to the complex symptoms experienced. These symptoms result in complex needs that require constant care, and extensive changes to family dynamics and couple relationships following diagnosis and throughout the disease trajectory.
It is imperative that the individual with an MND diagnosis has the support of their life partner as partners are vital in supporting individuals with long-term and palliative health conditions. In fact, support from friends or other family members has been found to be incomparable to support from a partner in terms of improving psychosocial functioning while living with a chronic condition (Li and Loke Reference Li and Loke2014; Pistrang and Barker Reference Pistrang and Barker1995). Individuals with MND are usually cared for at home, and mostly until their death, and so spouses are central to providing care to people with MND (Bruletti et al. Reference Bruletti, Comini and Scalvini2015; Warrier et al. Reference Warrier, Sadasivan and Polavarapu2020). However, caring for a partner with a palliative health condition can have many negative impacts on the couple’s relationship.
Firstly, changes in the couple’s relationship can have a devastating effect on both the physiological and psychological well-being of the couple. This is because partners likely live together, meaning that the care relationship is often time-consuming and intensive (Andréasson et al. Reference Andréasson, Mattsson and Hanson2023; Pinquart and Sörensen Reference Pinquart and Sörensen2011). The time-consuming nature of the couple’s carer relationship likely means a reduction in socialization resulting in feelings of isolation and loneliness (Li and Loke Reference Li and Loke2014). Research studies have shown that caring for a partner with a palliative health condition has a negative influence on partners’ mental health and well-being, such as an increase in depressive episodes (Burton et al. Reference Burton, Zdaniuk and Schulz2003). Caregiving has also been reported to affect the physical health of partner caregivers who report fatigue, less energy, and sleep disturbances (Chen and Chen Reference Chen, Chu and Chen2004; Oh and Schepp Reference Oh and Schepp2013). Several studies have found similar findings in partners of individuals with a progressive neurological illness, such as MND (Aoun et al. Reference Aoun, Bentley and Funk2013; Baxter et al. Reference Baxter, Baird and Thompson2013; Conroy et al. Reference Conroy, Kennedy and Heverin2021). As the MND condition worsens, there is a loss of independence and thus patients become more dependent on their caregiver, which has also been found to increase the partner’s psychological distress and worsen their quality of life (Bassola et al. Reference Bassola, Cilluffo and Lusignani2021; Bruletti et al. Reference Bruletti, Comini and Scalvini2015; Roach et al. Reference Roach, Averill and Segerstrom2009). Partners also often neglect their own health and well-being, which can lead to further declines in the partner’s mental and physical health (Li and Loke Reference Li and Loke2014).
Secondly, a diagnosis of MND can affect the dynamics of the couple’s relationship. Partners in general often feel a moral obligation to care for their partner and consequently love and caregiving roles become intertwined. This can lead to a shift in identity and autonomy with couples becoming unable to distinguish between being part of a couple and being a carer (Andréasson et al. Reference Andréasson, Mattsson and Hanson2023). With this change in identity, individuals can experience a loss of sense of self, which can lead to resentment. Changes in couple relationships can also lead to alterations in family dynamics as, in addition to taking on the role of carer, the spouse becomes fully responsible for housework, childcare, and financial demands, which ultimately results in changes to the power balance in the relationship (Andréasson et al. Reference Andréasson, Mattsson and Hanson2023).
Finally, MND comes with an array of specific, often sudden onset, cognitive and behavioral symptoms to which caregivers need to adapt (Flemming et al. Reference Flemming, Turner and Bolsher2020). Caregivers are required to master new technical and nursing skills as the condition deteriorates (Bruletti et al. Reference Bruletti, Comini and Scalvini2015). Additionally, as MND develops, patients are still able to make decisions regarding their care but changes in their communication and behavior result in their partner having to become an advocate. Behavioral changes in particular have been shown to be the strongest predictor of psychosocial distress and decreased well-being of caregivers of persons with MND (De Wit et al. Reference de Wit, Beelen and van den Heerik MS2019; Olesen et al. Reference Olesen, Cour and With2022). Furthermore, as MND progresses, there are changes in intimacy and to couples’ sexual relationships due to a loss of sexual function and impairments in verbal communication, which has been found to relate to increased strain on the relationship (Atkins et al. Reference Atkins, Brown and Leigh2010).
Research on the impact of an MND diagnosis on the couple’s relationship and the challenges faced throughout the disease trajectory is sparse. Most research to date has focused on caregiver burden, well-being, needs, resilience, and coping strategies (Warrier et al. Reference Warrier, Sadasivan and Polavarapu2020); little research has looked specifically at how couple relationships change over the course of the whole disease trajectory and the impact these changes have on both partners. Given that partners are considered vital caregivers to individuals with long-term palliative conditions and that changes in couple relationships can mutually and significantly impact both the patient’s and the carer’s quality of life and their psychological health (Li and Loke Reference Li and Loke2014; Munan et al. Reference Munan, Luth and Genuis2021), it is imperative to conduct research that specifically explores the changes in the couple’s relationship in order to guide future policies to help provide targeted support for the couple during these relationship changes (Flemming et al. Reference Flemming, Turner and Bolsher2020). This can be achieved through a scoping review that allows for the collating of existing research to develop new insights and identify gaps in the research, which is vital when research concerns vulnerable groups (Flemming et al. Reference Flemming, Turner and Bolsher2020).
Research question and aims
The research question was “What is the current state of the research literature examining the impact of the MND journey on the couple’s relationship?” The aims of our scoping review were to explore
1. The nature and scope of existing research on the impact of the MND journey on the couple’s relationship.
2. The implications of the research findings and directions for future research.
Methods
This scoping review follows the Joanna Briggs Institute (JBI) methodological guidelines for conducting scoping reviews outlined in Peters et al. (Reference Peters, Godfrey and McInerney2020; Reference Peters, Marnie and Godfrey2021). In line with these guidelines, the review is reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) (Tricco et al. Reference Tricco, Lillie and Zarin2018) to ensure transparency. Additionally, we followed the data extraction guidelines outlined in Pollock et al. (Reference Pollock, Peters and Khalil2023).
Search strategy
The search strategy (Table 1) was developed collaboratively by the research team and adapted from the search strategy used by Flemming et al. (Reference Flemming, Turner and Bolsher2020). Several terms for MND, carers, and relationships were used. Searches were run in the electronic databases MEDLINE, PubMed, Psychology Database, and CINAHL. Searches were run from inception to the 29th of January 2024. Screening was undertaken by a first reviewer (E.M.) and checked by a second reviewer (S.C.). From the 2787 abstracts initially reviewed, only 8 disagreements were noted. These disagreements were resolved via consensus by a third reviewer (N.C.-B.). An updated search was undertaken in May 2024.
Search strategy for MEDLINE
Inclusion criteria
The inclusion criteria for studies were as follows:
• Explores the impact of the MND journey on the relationship between partners.
• Qualitative studies, primary research, peer-reviewed material, systematic literature reviews, full-text available.
• Participant population included individuals with MND and/or partners who have experience caring for an individual with MND.
• Published in the last 20 years.
• Available in the English language.
Theses, protocols, and only abstracts available were excluded from the scoping review. Mixed methods papers were included if the qualitative data could be easily extracted.
Data extraction
Data extraction was carried out by a first reviewer (E.M.) and checked by a second reviewer (S.C.) using guidelines outlined in Pollock et al. (Reference Pollock, Peters and Khalil2023). Relevant data included the aim, type and number of participants, methodology, results, and conclusions. The results of the data extraction can be seen in Table 2.
Data extraction
Synthesis
A thematic analysis approach was used to synthesize the data. We utilized the thematic analysis framework developed by the National Centre for Social Research (Ritchie and Spencer, Reference Ritchie, Spencer and Huberman2002). This framework involves a systematic approach consisting of several phases. First, the researchers familiarized themselves with the data, and codes were generated based on the research question. A thematic framework was then established by revisiting the aims of the study while also identifying any emerging themes; from this process, several subthemes also emerged within the overarching themes. Each theme was then clearly defined to reflect the patterns in the data. Differences in coding were resolved by consensus among the research team, more details can be seen in the Online Appendix.
Results of search and inclusion
A total of 2822 results were identified from the electronic databases. Following removal of duplicate studies, 2619 studies were excluded based on title and abstract screening (see Figure 1). A total of 52 studies remained for full review, of which 15 were found to be relevant to the aims of the scoping review and fit within the inclusion criteria of the search.
PRISMA-ScR 2020 flow diagram.
Characteristics of included studies
The majority of the studies were published in the United Kingdom (2), the United States (2), Ireland (2), Italy (2), and Canada (2). Other studies were published in Denmark (1), India (1), Sweden (1), and Belgium (1). One study included a sample from Ireland, the Netherlands, and England. All but 1 of the studies was published in a peer-reviewed journal. Most of the included studies focused on patient and carer dyads (7) or just carers (6), while 1 study focused on health-care professionals and carers. Most of the studies were qualitative (11). The remaining studies were mixed methods (4).
Characteristics of participants
The experiences of 358 individuals with MND and 560 carers were represented. The age range of individuals with a diagnosis of MND was 25–84 years. Of the studies which reported participant characteristics, most of the individuals diagnosed with MND were male (250; 181 female). The age range for the carers in the included studies was 22–81 years. Most carers were female (241) compared to male (194). The experiences of 253 partners or spouses were represented in the studies with the remaining carers represented being made up of family members, informal carers, or having unspecified relationships to the individuals with MND. For consistency, spouses and partners will be referred to as partners throughout the paper.
Thematic analysis
Five themes were drawn from the review of the study findings. These themes were broken down further into several subthemes:
1. Adjusting to new roles
1.1 New household roles
1.2 Role as carer
2. Changes in communication and values
2.1 Communication issues
2.2 Changes in personal values
3. Spouse well-being and health
3.1 Psychological well-being
3.2 Physical well-being
4. Changes to social relationships
5. Intimacy changes
The numbers in superscript relate to the corresponding number assigned to the studies in Table 2.
Adjusting to new roles
New household roles
The findings of the studies suggested that as the disease progresses and the range of impairments increases, partners of individuals with MND had to take on more roles and responsibilities, such as financial responsibilities, and often experienced a role reversal.1,2,3,4,5,6,7,8,10,12,13 Often following a diagnosis of MND, the household income reduced from 2 incomes to 1, the partner had to reduce their working hours, or stop working altogether to meet the demands of the carer role, which resulted in less money and financial concerns.4,5,6,10,13 Additionally, some studies revelated that partners had to learn new skills related to the pragmatics of daily life, such as mastering household tasks, home repairs, or car maintenance, which were previously the role of the person diagnosed with MND.3,6 Additionally, several studies reported how following a diagnosis of MND there was often an alteration in family dynamics, with partners having to take on more parental responsibilities.2,4,5,8,10,12 These shifts in household and family roles often caused stress and frustration which at times resulted in conflicts within the couple’s relationship.2,5,6
Role as a carer
In addition to having to adjust to new household roles, partners also reported having to adjust to becoming a carer. Several studies reported that individuals with MND became completely dependent on their partner as their condition progressed.3,5,6,9,15 Partners felt completely responsible for their partner’s health and believed that they had a duty of care to their sick loved one.6,8,11,13,15 The studies reported that undertaking the role of a carer led to feelings of immense pressure from having to take on too much/total responsibility for their partner resulting in feeling as though their own life had become restricted or put on hold.3,5,6,8,13,15 As the condition worsened and dependency on medical devices increased, partners had to learn new skills to adapt to their new role as a carer such as learning how to use wheelchairs, eye gaze systems, and Percutaneous Endoscopic Gastrostomy (PEGs).2,3,6,8,15 They also had to provide physical support such as helping their partner to get dressed, transferring them to beds or wheelchairs, and guiding them through their daily activities, which they reported as difficult to adapt to.2,5,8,13,3 Additionally, as the partner took on the role of carer, they also became an advocate for their spouse and an important source of information. This resulted in them becoming responsible for making decisions and for their partner’s health-care needs and visits.2,11,13,14 These changes in roles made partners feel more like a parent or carer than a spouse, which led to changes in their relationship dynamics.4,5,8,15
Changes in communication and values
Communication issues
Several studies reported changes in communication to be an issue in couple relationships as a function of MND inhibiting speech.2,4,7,8,10 Specifically, partners had to develop new forms of communication such as using eye gaze equipment, voice banking software, or simpler methods such as hand signals, which, while improving the patient’s quality of life, led to frustration and misunderstandings.6,8,13 Several studies also reported that communication issues led to partners feeling lonely as they were unable to have the same level of connection that they once had with their partner.6,8,9 Patients reported still wanting to be in control of making decisions; however, with a decline in communication skills this became complex and distressing and often resulted in conflicts between partners.2,6,8,13,15 Some studies reported that both partners often hid their feelings as they did not want to upset or burden the other person.9,12,13,15 However, interestingly, other studies reported that open communication is important within the couple’s relationship, with mutual understanding and having an open, reciprocal relationship prior to diagnosis helping to reduce frustration and burden during the disease trajectory.1,7,9,10,15
Changes in personal values
In addition to changes in communication, studies also reported that partners’ personal values changed.1,2,4,7,9,11,13 In particular, several studies reported that as time together was now limited, spouses experienced a change in their outlook and values such as prioritizing living in the moment and appreciating what little time they had left, learning to be resilient and how to have a positive outlook, as well as putting their own life on hold to engage in activities that mattered to their partner.2,7,9,13 However, some spouses reported that this led to changes in their identity and stated that they experienced a loss of self as they had to reinvent themselves to adapt to their new situation.1,7,13,15 Other studies suggested that partners experienced difficulty accepting the diagnosis at the beginning which had a negative effect on their values and outlook.1,4,9,11,13,15
Spouse well-being and health
Most studies reported that caring for a partner with MND had a significant effect on the caregiver’s physical and mental health and well-being.
Psychological well-being
The studies reported that partners experience a range of complex and ever-changing emotions caring for their partner with MND. These included fear, anger, sadness, and frustration due to changes in their partner’s behavior and language and uncertainty about the future.1,2,3,4,5,8,9,12,13,15 Partners frequently experience psychological and emotional distress from watching someone they love deteriorate.3,8 They also reported feeling a sense of loss while their partner was still alive due to changes in their behavior and language, and no longer appearing to be who they once were.2, 8, 13 Partners reported experiencing guilt and conflicting emotions for a number of reasons including being in love with their partner but often hoping that the MND journey would come to an end due to the immense burden they felt, feeling fearful of the future but wanting to live in the moment, and feeling sorry for their partner but also angry because they missed their former life together.2,4,5 The studies reported that caring for a partner with MND did not allow time to oneself to pursue hobbies or take a break from care responsibilities which negatively impacted the carer’s well-being and led to frustration. 3, 4, 5, 8, 9, 10, 12 Some studies reported that respite care is important in giving partners time to themselves, which was found to improve their well-being and the quality of the couple’s relationship. However, partners were often unwilling to utilize respite care as they felt totally responsible for their partner and did not want to relinquish control over their care.5,8,10 In addition to feeling the burden of responsibility, studies reported that partners often felt as if they were not doing enough as they could not aid recovery, which led to feelings of helplessness.5,6,13 Partners were reported as often neglecting their own mental health and well-being in favor of adopting the role of carer.2,5,10 Several studies reported that there is currently a lack of support for partners of individuals with MND.1,14,13
Physical well-being
The studies reported that partners typically had little or even any time to themselves, which led to reports of physical exhaustion and poor sleep.2,3,4,5,13 Additionally, partners often reported becoming injured as a result of the physical demands of caring, such as experiencing strain and back injuries from lifting as their partners mobility reduced throughout the disease trajectory.3,8,13 The physical exhaustion and injuries the partners experienced were further exacerbated by neglecting their own needs and health. Partners reported not taking the time to themselves to address their own health problems or needs, which frequently led to them getting sick, an increase in comorbidities, and canceling or missing doctor appointments.3,4,5
Changes to social relationships
Studies reported that partners of an individual with MND experienced changes in their social relationships. These changes occurred for several reasons. First, partners reported having a lack of time to socialize as well as being confined to the home, which limited their ability to engage in regular activities, make plans, or respond spontaneously to invitations. This reduced the number of social relationships that partners were able to maintain resulting in a loss of friendships.5,6,8 Second, due to cognitive impairments, individuals with MND can be prone to emotional outbursts and display inappropriate behaviors in public which partners reported led to feelings of awkwardness or even confrontations with other members of the public. These experiences left partners feeling more hesitant to leave the house.2,13 Third, while studies reported that both social and family support are important, partners of individuals with MND often felt like a burden to their family and felt guilty asking their family for help so took on total responsibility of care.7,9,12 Leading on from this, some studies reported that partners were unwilling to share the burden of care with others and did not want outside help.3,5,10,11,13 Partners reported becoming frustrated with the increase in people coming into home (i.e. community health-care workers).2,5,13 The loss of social relationships impacted how caregivers related to other people and themselves1,2,3,4,6,8,13 and led to feelings of loneliness and a sense of being trapped.1,2,9,12
Intimacy changes
The final theme identified from the studies relates to changes in intimacy. There was a limited number of studies that reported on intimacy changes in relationships, with one study suggesting this is because the topic is rarely discussed.13 However, the studies that reported on intimacy changes suggested that due to physical impairments, intimacy between couples was reduced or significantly altered. Partners reported that as the condition deteriorated, they could still kiss and hug their partner, but increasingly their partner was only able to passively respond.2,5 Several studies reported that there was a reduction in relationship satisfaction and sex life as the disease progressed.2,4 Despite changes to intimacy, spouses in several studies reported that love and mutuality was important during the disease progression, with strong prediagnosis marital relationships and a shared love for one another enabling mutual comfort which reduced the burden on the carer and resulted in the relationship staying strong after the MND diagnosis.7
Discussion
Our review sought to identify, examine, and synthesize the qualitative evidence on the current state of the research literature examining the impact of the MND journey on the couple’s relationship. The included studies reported on the impact of a partner diagnosed with MND on role adjustment, changes in communication and values, partner well-being, social relationships, and intimacy.
Most of the studies reported on the impact of MND on role reversal and the adjustment of the couple’s relationship to new household and caring roles. These shifts in household roles and family dynamics can lead to feelings of frustration, stress, and conflict within the couple’s relationship (Olesen et al. Reference Olesen, Cour and With2022). Couples often experienced identity issues due to this change in their relationships, with individuals with MND no longer able to take on roles they were once responsible for and their partners no longer seeing themselves as a spouse but as a carer (Pinto et al. Reference Pinto, Geraghty and Yardley2021). With this change in the couple’s identity, partners can experience a loss of self, which can lead to resentment and changes in the balance in the relationship (Andréasson et al. Reference Andréasson, Mattsson and Hanson2023). These changes are further exacerbated by having little time to themselves and due to the timeframe of the disease trajectory (Conroy et al. Reference Conroy, Kennedy and Heverin2021). This supports research which found that partners experience a sense of moral obligation (“for better or worse”) to care for their spouse. The new caregiving/care-receiving relationship that forms change the dynamics of power in the relationship as well as the partner’s personal autonomy (Andréasson et al. Reference Andréasson, Mattsson and Hanson2023).
Communication was a key theme that emerged from the scoping review, particularly in relation to how this impacted the couple’s relationship. MND leads to a degeneration of both upper and lower motor neurones, which can cause impairment in communication, breathing, and swallowing (Paynter et al. Reference Paynter, Cruice and Mathers2019). The studies reported that couples had to develop new forms of communication with each other. However, this often led to frustration, misunderstandings, and feelings of intellectual and emotional isolation, as communication reduced (Paynter et al. Reference Paynter, Cruice and Mathers2019). Obviously, this reduction in communication influences the couple’s relationship and their sense of connectedness. Furthermore, as communication skills deteriorate, the partner with MND becomes increasingly reliant on their partner’s support which, as previously stated, changes the couple’s relationship dynamic (Andréasson et al. Reference Andréasson, Mattsson and Hanson2023; Paynter et al. Reference Paynter, Cruice and Mathers2019). Joubert and Bornman (Reference Joubert and Bornman2012) suggest that maintaining communication is vital in dealing with emotions elicited by changes caused by MND. Alternative communication strategies can help to maintain intimate relationships between couples such as communication aids and sign language (Joubert and Bornman Reference Joubert and Bornman2012).
A further theme that consistently emerged from the review was the impact that changes in the couple’s relationship had on the couple’s psychological and physical well-being. Partners experienced a range of conflicting emotions, which were largely due to changes in their partner’s behaviors and language (Li and Loke Reference Li and Loke2014). Individuals with MND often experience apathy, egocentrism, impulsivity, and decreased social adaptation, which can negatively impact caregivers (Rusina et al. Reference Rusina, Vandenberghe and Bruffaerts2021). Additionally, due to physical impairments, there is a reduction in intimacy between partners (Olesen et al. Reference Olesen, Cour and With2022). Partners reported feeling emotional and psychological distress watching their loved one deteriorate, as well as conflicting emotions such as guilt, anger, and resentment, which can have a negative effect on the couple’s mental well-being (Olesen et al. Reference Olesen, Cour and With2022). Behavioral changes as a result of MND are the strongest predictor of psychological distress in caregivers of individuals with MND (De Wit et al. Reference de Wit, Beelen and van den Heerik MS2019; Olesen et al. Reference Olesen, Cour and With2022). Partners also reported a decline in their physical health due to the physical demands and lack of rest that results from caring for an individual with MND. These findings are supported by research which suggests that partners have a reciprocal influence on each other’s quality of life and psychological health. Thus, changes in the couple’s relationship and role can have a negative effect on the couple’s mental and physical well-being, and vice versa (Baucom et al. Reference Baucom, Fischer and Corrie2020; Li and Loke Reference Li and Loke2014).
A final key theme that emerged from the review was the changes to social relationships external to the couple following an MND diagnosis and over the course of the disease trajectory. Several studies reported how partners of individuals with MND felt lonely and trapped within their relationship as they were no longer able to socialize as they once had (Wu et al. Reference Wu, Tam and Buch2022). This is largely due to the time-consuming nature of caring for a partner with MND, which leaves little time for hobbies and social engagements (Wu et al. Reference Wu, Tam and Buch2022). Studies also suggested that due to behavioral and cognitive changes, partners often felt embarrassed or awkward in public spaces for fear of their partner displaying inappropriate behaviors (Olesen et al. Reference Olesen, Cour and With2022). Thus, having a partner with MND affects how the couple relates to others (Olesen et al. Reference Olesen, Cour and With2022). This is supported by research that has found that partners who act as carers experience a sense of social isolation (Andréasson et al. Reference Andréasson, Mattsson and Hanson2023). Love et al. (Reference Love, Street and Ray2005) indicated that prolonged caring for an individual with MND results in a substantial loss of social support, which negatively affects the carer’s well-being, and may result in anxiety, depression, and psycho-social distress. This can lead to role dysfunction which ultimately negatively impacts their ability to provide care to the individual with MND and their relationship with their partner (Love et al. Reference Love, Street and Ray2005).
Future research
The findings of this research suggest that partners are integral to the care of individuals with MND (Flemming et al. Reference Flemming, Turner and Bolsher2020). However, despite the literature suggesting that caring for a partner with MND is likely to have a negative influence on the couple’s relationship, little support is available to partners of individuals with MND or for couples to assist them in planning for and navigating changes (Bilenchi et al. Reference Bilenchi, Banfi and Pagnini2022; Flemming et al. Reference Flemming, Turner and Bolsher2020; Trucco et al. Reference Trucco, Backhouse and Mioshi2024). The main support available currently appears to be respite care. Yet, as the results of this review found, partners are often hesitant to use respite care as they are unwilling to share the burden of care due to a belief that the couple’s relationship is inviolable and that care is personal (Olesen et al. Reference Olesen, Cour and With2022). Therefore, it is important for future research to identify additional ways of supporting partners. Furthermore, the findings of this review suggest that future research needs to investigate ways of combating the social isolation that couples living with MND face (Andréasson et al. Reference Andréasson, Mattsson and Hanson2023). Finally, the results of the scoping review suggest that there is a lack of research on the impact of MND progression on intimacy between partners, with the suggestion that it is often a taboo subject and therefore not openly discussed (Flemming et al. Reference Flemming, Turner and Bolsher2020). However, given that shared love and intimacy are vital in reinforcing a strong couple relationship throughout the MND trajectory, future research needs to look at ways of supporting couples through these changes (Bassola et al. Reference Bassola, Cilluffo and Lusignani2019). The National Institute for Health and Care Excellence (NICE) MND guidance suggests it is vital that health-care professionals discuss with individuals how the disease is likely to affect their daily living including adjusting to changes in relationships, roles, and intimacy (NICE 2016/2019). Therefore, future research is needed to develop a better understanding of how couple relationships change over the course of the disease trajectory, as well as what is needed to support partners through these relationship changes. This can guide future policies to help provide targeted support for couples and to gather evidence of what is to be expected to enhance the NICE guidance for conducting multidisciplinary team assessments. Such support and changes in policy might be able to improve the quality of life for both the person with MND and their partner, which is considered an urgent priority in the UK today (Kluger et al. Reference Kluger, Hudson and Hanson2023).
Limitations
This study is not without limitations. First, several of the studies reported on informal carers or family carers or did not specifically report what relationships the carers had with the individual with MND. Very few studies reported entirely on the experiences of partners. As such, we were unable to derive from the data the experiences of partners exclusively, which may reduce the validity of the findings. Second, in comparison with the rigor of a systematic literature review, scoping reviews are less comprehensive and might render the study more vulnerable to bias. As observed by Tricco et al. (Reference Tricco, Lillie and Zarin2016), there has been a marked increase in scoping reviews since 2012, but there remains variability in the ways in which scoping reviews are conducted and reported. In the case of this study, the research team attempted to minimize bias by following the PRISMA-ScR and ensuring that the screening procedure was reviewed by 2 members of the research team. Moreover, despite the potential limitations, a scoping review was deemed to be the most appropriate method in this case, given that the aim was to gain an understanding of the breadth of studies available in the apparent absence of any pre-existing comprehensive review of the impact of the MND journey on the couple’s relationship. This helped identify gaps in the existing literature, which might be a useful focus of research in this area.
Conclusion
The results of this scoping review revealed that recieving an MND diagnosis and the subsequent progression of the disease has a profound impact on the couple’s relationship. The results suggest that MND can lead to changes in couple relationships through partners having to adjust to new roles, changes in communication, declines in caregivers’ health and well-being, changes in intimacy, and changes to social relationships. Future research is needed to develop a comprehensive understanding of how couple relationships change over the course of the MND trajectory and to guide future policies that will help provide targeted support to couples as they navigate these complex and challenging relationship changes.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/S1478951524002141.
Funding
This research received no specific grant from any funding agency, commercial, or not-for-profit sectors.
Competing interests
The authors declare no competing interests.
Open access
