TY - JOUR
T1 - Home enteral nutrition
T2 - Use of photo-elicitation to capture patient and caregiver experiences
AU - Asiedu, Gladys B.
AU - Carroll, Katherine
AU - Griffin, Joan M.
AU - Hurt, Ryan T.
AU - Mundi, Manpreet
N1 - Publisher Copyright:
© 2018 The Authors. Health Science Reports published by Wiley Periodicals, Inc.
PY - 2018/8/1
Y1 - 2018/8/1
N2 - Background: Despite the importance of home enteral nutrition (HEN), there is a lack of understanding within the medical and general community of how HEN impacts the lives of patients and caregivers. Using a theoretical orientation that attends to the materiality of both everyday and medical objects, we explored patients' and family caregivers' everyday experiences of administering feeds during HEN. Methods: Using the photo-elicitation interviewing method, patients on HEN and their family caregivers were asked to take up to 10 photographs to portray material items and activities that they considered foundational to HEN. They subsequently narrated their experiences and the participant-generated photographs in an interview. Participant-generated photographs (126) and accompanying narratives were analyzed using layered analysis, and results were theorized with attention to both social and material significance of HEN. Results: Patients and caregivers detailed overcoming misconceptions of HEN, and through their use of photographs, they conveyed their expertise in developing their own HEN feeding systems and practices, that used both the material artifacts provided by the hospital (the tube, syringe, and formula) as well as everyday material items found in the patient's home. More than this, photographs and patient narratives depicted intimate involvement of patients' families in tube feeding. This yielded a more comprehensive understanding of the material and experiential realities of HEN. Conclusion: Home enteral nutrition was found to be a shared familial experience, that in addition to requiring medical equipment also incorporated ordinary material artifacts within the social setting of the home and family life. To more accurately convey the material, experiential, and social realities of HEN to future patients, our findings underscore the importance of drawing on both visual and textual forms of patient-produced information in the development of HEN patient educational materials.
AB - Background: Despite the importance of home enteral nutrition (HEN), there is a lack of understanding within the medical and general community of how HEN impacts the lives of patients and caregivers. Using a theoretical orientation that attends to the materiality of both everyday and medical objects, we explored patients' and family caregivers' everyday experiences of administering feeds during HEN. Methods: Using the photo-elicitation interviewing method, patients on HEN and their family caregivers were asked to take up to 10 photographs to portray material items and activities that they considered foundational to HEN. They subsequently narrated their experiences and the participant-generated photographs in an interview. Participant-generated photographs (126) and accompanying narratives were analyzed using layered analysis, and results were theorized with attention to both social and material significance of HEN. Results: Patients and caregivers detailed overcoming misconceptions of HEN, and through their use of photographs, they conveyed their expertise in developing their own HEN feeding systems and practices, that used both the material artifacts provided by the hospital (the tube, syringe, and formula) as well as everyday material items found in the patient's home. More than this, photographs and patient narratives depicted intimate involvement of patients' families in tube feeding. This yielded a more comprehensive understanding of the material and experiential realities of HEN. Conclusion: Home enteral nutrition was found to be a shared familial experience, that in addition to requiring medical equipment also incorporated ordinary material artifacts within the social setting of the home and family life. To more accurately convey the material, experiential, and social realities of HEN to future patients, our findings underscore the importance of drawing on both visual and textual forms of patient-produced information in the development of HEN patient educational materials.
KW - HEN education
KW - family caregivers
KW - home enteral nutrition
KW - materiality
KW - photo-elicitation interviewing
KW - tube feeding
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U2 - 10.1002/hsr2.56
DO - 10.1002/hsr2.56
M3 - Article
AN - SCOPUS:85061450226
SN - 2398-8835
VL - 1
JO - Health Science Reports
JF - Health Science Reports
IS - 8
M1 - e56
ER -