Factors affecting anticipatory grief in family carers of people living with Motor Neurone Disease: The role of MND symptomatology

Trucco, Ana Paula (2024) Factors affecting anticipatory grief in family carers of people living with Motor Neurone Disease: The role of MND symptomatology. Doctoral thesis, University of East Anglia.

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Abstract

Caring for someone living with Motor Neurone Disease (MND) can be emotionally, psychologically and physically demanding. Due to the nature of disease progression, family carers are often confronted with continuous changes and losses, leading to the phenomenon of anticipatory grief (AG). Currently, studies focusing on carer AG are limited. Thus, the present research project focuses on identifying key factors that affect AG in this population to better support carers and inform future interventions and research.

A mixed-methods approach was used to address the research questions. Firstly, a systematic review was conducted to identify the current knowledge about factors associated with MND carers’ grieving processes, including anticipatory, post-death and prolonged grief disorder. Results identified some factors associated with carer AG which were particular important in this population, such as the knowledge of MND, the uncertainty and unpredictability of the disease, absence of emotional acceptance and presence of emotional avoidance. The findings demonstrated that most of the literature targeted post-death and prolonged grief disorder and there was limited research on AG with no quantitative studies exploring factors associated with this phenomenon. To overcome this gap in the literature, the further exploration of factors affecting AG was considered crucial.

The second study used a qualitative methodology. Interviews were conducted with current MND carers about their experiences of changes and losses during the trajectory of the disease and how they coped emotionally with new circumstances. Three themes were generated, and findings suggested that carers transit an emotional journey during the progression of the disease, which starts with great destabilisation when diagnosis is conveyed, followed by the adaptation to continuous changes and losses and finally acceptance of the new reality. Different coping strategies that best work for carers to overcome these changes and losses were also revealed, including knowing (or not) about the disease, receiving formal and informal support and focus on the present moment.

To further understand carer AG, the third study explored the impact of various disease- and carer-related factors, which were devised from previous literature as potential predictive factors of AG, including disease severity, behavioural changes, relationship closeness, familism and hours of care provided. The findings suggested that MND symptoms (i.e., disease severity and behavioural changes) have the greatest impact on carer AG.

The final study focused on exploring the moderating role of psychological inflexibility between MND symptoms and carer AG. Results demonstrated that while psychological inflexibility, disease severity and behavioural symptoms are associated with carer AG, psychological inflexibility does not serve as a moderator of the relationship between MND symptoms and AG.

This thesis has shown that MND symptoms, along with changes and losses, are the primary predictors and causal factors of carer AG. Additionally, carer-related and contextual factors have been identified as potential influencers of the intensity of grieving emotions. The findings highlight the interplay among factors contributing to carer AG, suggesting areas that may require targeted interventions and future research to better support emotionally carers of people living with MND.

Item Type:	Thesis (Doctoral)
Faculty \ School:	Faculty of Medicine and Health Sciences > School of Health Sciences
Depositing User:	Kitty Laine
Date Deposited:	12 Nov 2024 09:59
Last Modified:	12 Nov 2024 09:59
URI:	https://ueaeprints.uea.ac.uk/id/eprint/97630
DOI:

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