Factor MND
Research type
Research Study
Full title
Factors Affecting Family Carers in Motor Neuron Disease
IRAS ID
281943
Contact name
Eneida Mioshi
Contact email
Sponsor organisation
University of East Anglia
Duration of Study in the UK
3 years, 0 months, 0 days
Research summary
Summary of Research
Motor Neurone Disease (MND) is a progressive and fatal neurodegenerative disease affecting motor neurones in the brain and spinal cord, with various patterns of progression categorised in different clinical phenotypes. Alongside these motor losses, patients can also present with cognitive and behavioural changes. The impact of the diagnosis of MND can be difficult not only for the person affected by the condition, but their family carers as well. Research has found a significant prevalence of depression and anxiety among family carers of people with MND. Currently, the research on how to best support the anxiety and depression of family carers of people with MND is limited. This study is looking at the potential impacts of different factors on carer’s depression and anxiety. These factors are: 1)Potential impacts of MND patient behavioural change on carer depression and anxiety. 2) Potential impacts of familism and relationship closeness on carer depression and anxiety 3) Potential impacts of psychological flexibility on carer depression and anxiety 4) Potential impacts of patient disease severity on carer depression and anxiety. Understanding the mechanism in which these different factors affect family carer depression and anxiety can make a significant contribution to the evidence-based development of family carer interventions in this population. iven the possible contributions of the above factors to family carer depression and family carer anxiety, and the potential to address some of these factors to improve family carer wellbeing, our study aims are: 1) To investigate the predictive effects of psychological flexibility, familism, relationship closeness, patient behaviour changes and disease severity on carer depression. 2) To investigate the predictive effects of psychological flexibility, familism, relationship closeness, patient behaviour changes and disease severity on carer anxiety.Summary of Results
This study was carried out by a research team based at the University of East Anglia (UEA), Norwich, UK. We created an acronym, “FACTOR-MND”, to facilitate communication and identification of the research project and we will refer to the research project with this acronym from here onwards.FACTOR-MND was initially a non-funded project, led by Prof Eneida Mioshi, and sponsored by the University of East Anglia (UEA), United Kingdom (UK), and received ethical approval from the West Midlands - Black Country Research Ethics Committee, UK [IRAS 281943, REC reference number: 20/WM/0185] in July 2020. A PhD studentship was later linked to this research project through a scholarship funded by MND Scotland, starting in February 2021.
The FACTOR-MND project, aiming to explore factors impacting on current carers of people living with Motor Neurone Disease (MND)’s wellbeing started in July 2020. It firstly involved a study with collection of data within the UK asking questions about carers’ wellbeing, with a particular focus on what may affect carers' anxiety and depressive symptoms.
Over time, the project evolved as it then included a PhD project in it. A novel research question to investigate MND carer anticipatory grief was included. To address this, changes were made in the protocol to 1) include a measure to assess anticipatory grief in carers, 2) integrate an interview study to explore carers’ experiences of changes and losses during the trajectory of MND, and 3) extend recruitment strategies.
Recruitment was promoted through different avenues. Initially, two NHS sites in the UK, the Norfolk and Norwich University Hospital NHS Foundation Trust and Sheffield Teaching Hospitals NHS Foundation Trust supported recruitment. Online dissemination also occurred through MND/ALS Associations and their websites, presentations at carers’ support groups and social media. Dissemination of the study also took place in United States and Australia. Approval to disseminate the FACTOR-MND project in these countries for recruitment purposes was obtained from the Faculty of Medicine and Health Sciences Research Ethics Subcommittee from the University of East Anglia (UK) [ETH2223-0204].
We recruited a total of 79 participants (UK=75, USA=5) for the quantitative study. Online survey data were collected and managed by the Joint Information Systems Committee electronic data. All data for the quantitative study were collected anonymously. A total of 14 carers participated in the qualitative study.
Patient and public involvement and engagement meetings:
As part of our approach to ensure the relevance and comprehensiveness of this research project, the team engaged in Patient and Public Involvement and Engagement meetings with carers and stakeholders. These collaborative meetings were pursued and designed to incorporate the perspectives and insights of individuals affected by MND, and those connected to MND, fostering a dynamic exchange and contribution of ideas.
As a result of a meeting with MND carers, it was recommended not using the term grief during the interview study with carers, as this could potentially evoke strong emotions and feelings and some people would find it distressing due to the traditional concept of grief related to death. Instead, they suggested employing more open-ended questions that allowed for an exploration of their experiences of losses and changes without directly labelling grief.Regular meetings with the Head of Regional Care Partnerships – Central and West, affiliated with the Motor Neurone Disease Association in the UK were also conducted to explore effective avenues for disseminating the research project for recruitment purposes among family carers of people living with MND in the UK. Suggestions and recommendations on approaching carers attending carers’ support groups were shared. In addition, the Head of Regional Care Partnerships facilitated connections with local coordinators from various branches across the UK organising carers’ support groups and meetings with local coordinators from MND local branches were conveyed to decide on dates for presenting the project at support groups.
FACTOR-MND revised study aims
Quantitative approach:
1. To investigate the predictive effects of psychological flexibility, familism, relationship closeness, patient behavioural changes and disease severity on carer depression.
2. To investigate the predictive effects of psychological flexibility, familism, relationship closeness, patient behavioural changes and disease severity on carer anxiety.
3. To investigate the predictive effects of psychological flexibility, familism, relationship closeness, patient behavioural changes and disease severity on carer anticipatory grief.Qualitative approach:
4. To explore current MND family carers’ experiences of anticipatory grief during the progression of the disease through qualitative interviews.Results
Quantitative approach
Seventy-nine participants (UK=74; US=5) were recruited for the study. Four respondents partially completed some of the instruments, therefore, they were removed from the data analyses which resulted in a dataset of 75 carers (UK=70; US=5).The majority of carers were female (65.3%), their mean age was 63.09 (SD=10.46), they were co-habiting with (94.7%) and looking after a spouse/partner living with MND (89.3%) for an average of 38.64 months. Approximately a quarter of carers provided more than 100 hours of care /week. As a group, carers had a relatively close dyadic relationship with the care recipient. and moderate levels of familism values.
People living with MND were mostly men (60%), mean age was 64.69 (SD=11.74). On average, they had received the formal diagnosis of MND within the previous 45 months. More than half of them (65.3%) exhibited behavioural symptoms and motor abilities of all of them were affected to some extent.
Study aims 1 and 2:
1. To investigate the predictive effects of psychological flexibility, familism, relationship closeness, patient behavioural changes and disease severity on carer depression.
2. To investigate the predictive effects of psychological flexibility, familism, relationship closeness, patient behavioural changes and disease severity on carer anxiety.As the research project progressed, it was decided not to address these aims as initially described. The rationale for this decision was to focus exclusively on MND carer anticipatory grief to gain deeper understanding of anticipatory grief emotions, and a better comprehension of this phenomenon within this population. Consequently, no analysis was performed to investigate the predictive effects of factors on carer anxiety and depressive symptoms.
However, it was decided to explore if anxiety and depression served as moderators on the relationship between MND symptomatology and carer anticipatory grief (Please refer to study aim 3).Study aim 3:
3. To investigate the predictive effects of psychological flexibility, familism, relationship closeness, patient behavioural changes and disease severity on carer anticipatory grief.In order to assess MND carers’ experience of anticipatory grief in this project, the Marwit and Meuser Caregiver Grief Inventory – short form (MMCGI-SF; Marwit & Meuser, 2005) was selected as the instrument to use. It presents three sub-scales linked to anticipatory grief: Personal Sacrifice Burden, which focuses on the losses and changes experienced by the carer in relation to the care they provide; Heartfelt Sadness and Longing, which encompasses the emotional reactions the carer experience, such as anger, guilt and sadness; and Worry and Felt Isolation, which relates to the carer’s feelings of losing social connections and support from others.
Which are the factors that best predict carer anticipatory grief?
Disease severity and behavioural changes were the only two factors impacting on carer anticipatory grief, as measured by the MMCGI-SH. When analysing individual sub-scales from the MMCGI-SH separately, results indicated that disease severity was the only variable predicting Personal Sacrifice Burden. It appears that as MND progresses, carers’ grieving emotions related to daily changes and losses become more pronounced and carers experience increasing levels of grief. Behavioural changes were the only factor significantly contributing to Heartfelt Sadness and Longing. This suggests that when behavioural changes are present, particularly disinhibition, apathy and stereotypical behaviour, carers’ intrapersonal grieving reactions are likely to emerge. Behavioural changes were also the only factor predicting Worry and Felt Isolation suggesting that carers’ feelings of losing connections and support from others tend to increase due to the presence of behavioural symptoms.Results showed that factors related to MND symptomatology (i.e., disease severity and behavioural symptoms), emerge as the primary predictors of anticipatory grief experienced by MND carers. In light of this, it was decided to explore avenues for better support carers in relation to their grieving emotions. As such, we investigated whether anxiety, depression and psychological inflexibility could serve as moderator factors between MND symptomatology and carer anticipatory grief. The focus of these factors was driven by their potential for intervention.
We aimed to answer two further research questions:
1. Does carer psychological inflexibility serve as a moderator variable capable of explaining the relationship between MND disease severity and behavioural changes present in the person living with MND and carer AG emotions?
A regression analysis was performed to answer this research question. Results demonstrated that while psychological inflexibility, disease severity and behavioural symptoms are associated with carer AG and independently affect carer anticipatory grief, psychological inflexibility does not serve as a moderator of the relationship between MND symptoms and anticipatory grief.2. Do carer anxiety and carer depressive symptoms moderate the relationship between MND behavioural symptoms and carer anticipatory grief?
A regression analysis was conducted to see how behavioural symptoms and anxiety, including how they interact, predict carer anticipatory grief. Another analysis looked at how depression affects this relationship. Results showed that carers who had higher levels of anxiety and depression may experience heightened levels of anticipatory grief reactions when behavioural symptoms are present in the person living with MND.Qualitative approach
Study aim 4:
4. To explore current MND family carers’ experiences of anticipatory grief during the progression of the disease through qualitative interviews.
14 carers were recruited for this aim. Most carers were female (71.73%), their mean age was 63.71 (SD=8.55) and they were all co-habiting with and looking after a spouse/partner living with MND.
People living with MND were mostly men (71.43%), their mean age was 67.86 (SD=8.78). On average, they had received the formal diagnosis of MND within the previous 37 months.To address this aim, we conducted interviews with current carers of people living with MND, with a specific focus on delving into their emotions in relation to the changes and losses experiences during the trajectory of MND. An adaptive cycle comprising destabilisation when diagnosis was conveyed, continuous adaptation to daily changes and losses and eventual acceptance of these changes and losses emerged. Carers reported feelings of resignation, sadness, tiredness, anger, loneliness and frustration through the course of the disease. Furthermore, interviews revealed some coping strategies employed by carers to face their emotions associated with anticipatory grief, such as knowing about MND, taking a practical approach to address the needs of the care recipient, receiving practical, formal and informal support, focusing on the present and accepting the circumstances or avoiding thinking about them.
REC name
West Midlands - Black Country Research Ethics Committee
REC reference
20/WM/0185
Date of REC Opinion
29 Jul 2020
REC opinion
Further Information Favourable Opinion