NHD clinical - HEF watch by Dr Ailsa Brotherton


Dr Ailsa Brotherton's research interests focus on the impact of enteral tube feeding upon the daily life and quality of life of patients and their carers. She is particularly interested in applied research for clinical practice which has a focus on advancing Dietetic Practice and the implications of the Mental Capacity Act for Practice.


and Dr Christina Lyons


Senior Research Fellows, School of Nursing and Caring Sciences University of Central Lancashire


Dr Christina Lyons is a senior research fellow at the School of Nursing and Caring Sciences, University of Central Lancashire. Her research interests include service and workforce development and knowledge transfer. She is currently lead academic for three funded knowledge transfer partnership projects with the NHS in the northwest of England.


Psychosocial issues of PEG feeding: understanding your patients’ needs Have you ever considered just how difficult it would be to stop eating and drinking for a day, a week, a month? Now imagine you could not eat again, ever, for the rest of your life. Just think for a moment about the implications of this; never being able to go out for a meal with your friends and family, no more bacon sandwiches for breakfast, no lattés at Starbucks, no birthday celebrations that revolve around food and wine and perhaps the ultimate difficulty, being the only member of your family excluded from the Christmas lunch table. The thought, for most of us is too horrendous to contemplate for long.


Comment from first author (AB): “During one interview that explored a patient’s perceptions of feeding, I was given the challenge [by the patient] of not eating and drinking at the next so- cial event I went to, which happened to be the christening of a friend’s baby. It struck me as she was speaking, that this was a strange challenge. Surely it couldn’t possibly be too difficult; thou- sands of patients who are receiving enteral feeds have to do this all the time; surely I could go without food and drink at a social event for just one afternoon?”


Medical and clinical issues still dominate the decision to place a PEG with little consideration to the impact of PEG feeding on the patient’s daily life, their quality of life or their emo- tional well-being. Quality of life is of- ten referred to (in passing) on hospital wards, but how do we define it, how do we explain to others what it means to us and how do we make judgements about how PEG feeding may impact on a patient’s quality of life when we know so little about their life? The decision to place a PEG poses complex challenges in clinical prac- tice as it is often so difficult to predict those patients who will benefit from PEG feeding and those who will quite simply find it a huge burden. The chal- lenges are not limited to those associ- ated with the feeding; the impact of the patient’s underlying disease on emo- tional and psychological well-being need to be fully considered, but it is often impossible to separate these out from the issues that arise purely from feeding.


Although we know little about the psycho-social impact of feeding, it


NHDmag.com Aug/Sept '10 - issue 57 Psychosocial issue Tiredness


Causes/contributing factors


Disturbed and delayed sleep associated with overnight feeding


Restricted ability to go out


The feeding regimen was particularly tying and time consuming, ‘It restricts me from going out’.


Impact on social life Burden placed on their carers


Difficulties finding a place to feed


We don’t have a social life


My partner’s normal social life has stopped existing for months


Difficult finding suitable facili- ties outside the home Impact of others’ opinions


Missing being able to eat and drink


Discussed by some patients but more widely discussed by carers who found this difficult to cope with and felt uncomfort- able eating and drinking in front of patients who were unable to take anything orally


Social occasions: Christmas, birthdays


Social occasions appeared to be particularly problematic for both patients and carers, espe- cially those which focus around food and drink. “We can’t even have a drink together at Christ- mas or even a piece of cake or a cup of tea. I don’t like drinking in front of him because I know he would love a cup of tea”.


Negative attitudes of others towards feeding


Feeling isolated because of the impact of PEG on relationships with close family members


Support/role of healthcare professionals


Flexibility with feeding regi- mens


Regular review/exploration of alternatives – consider new product developments which may reduce the hours required for feeding.


Discussion with patient and carer and signpost to appropri- ate local support services


The opportunity to discuss the impact on their life/carers’ sup- port groups or networks


Liaison with providers of local facilities


Solution focused interven- tions - patient and family are supported to focus on what is possible and achievable


Solution focused interven- tions - patient and family are supported to focus on what is possible and development of coping strategies


Provide opportunities for patient and family members to talk about their difficulties (elephant in the room) and offer a solution focused approach to resolving difficulties


(Source: Brotherton et al, Journal Human Nutrition and Dietetics, 2006) 21


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