About the Project
Motor neurone disease (MND), is a progressive degenerative disorder of the upper and lower motor neurones, causing weakness and wasting of muscles controlling limb movement, speech, swallowing, and breathing, leading to eventual death, usually from respiratory complications.
Malnutrition and weight loss, mainly due to progressive bulbar function deterioration, are common in patients with MND (pwMND) and associated with increased morbidity, disability and mortality. To battle malnutrition, several nutritional interventions exist following the diagnosis and during the early stages of the disease (e.g., dietary advice, food fortification and provision of oral nutritional support). However, with disease progression, many patients eventually lose the ability to maintain a safe swallow and an adequate nutritional intake by mouth. A well-establish practice to support this patient group is enteral feeding, via a gastrostomy tube placed directly into the stomach through the abdomen.
Although gastrostomy feeding is commonly used in pwMND, its benefits for the patient in terms of survival, nutrition and quality of life (QoL) remain debatable. Recent evidence suggested minimal nutritional benefits, especially for patients who decided to undergo the procedure at a relatively late stage over the course of the disease. The effect of gastrostomy on QoL for these patients and their family is currently not well understood, although it is thought to be beneficial by many. A few small-sized retrospective qualitative studies have provided an insight of patient and family/informal carer experiences and views following gastrostomy. However, there is a need for definitive, high quality evidence from studies with a stronger methodological design and larger sample sizes.
This PhD study proposes a cross-sectional qualitative exploration using semi-structured interviews with paired patients and family members/informal carers to elicit in-depth descriptions of their views, perceptions and experiences in relation to gastrostomy feeding and its impact on their lives. Interviews will be contacted with paired participants at three time-points: before gastrostomy, 1 month and 4-6 months after gastrostomy. Participants will be recruited from an established network of MND Care and research Centres across the UK, taking part in the PostGas study led by the supervisors of this PhD project.
This PhD proposal provides an excellent opportunity to undertake high quality research within a stimulating multi-disciplinary context in a state of the art facility. The PhD candidate will be responsible for the set-up, and day-to-day running of the study, and benefit from collaborating with colleagues from the University of Leeds and developing protocols for bio-sample collection, storage and analysis. The PhD candidate will be attending regular clinical research group meetings, seminar series and other research meetings within the department and the Faculty; and will be encouraged to attend national/international conferences and publish research findings in high-quality, international journals.
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