Short bowel syndrome and the impact on patients and their families: a qualitative study.
J Hum Nutr Diet
; 33(6): 767-774, 2020 12.
Article
em En
| MEDLINE
| ID: mdl-32779284
ABSTRACT
BACKGROUND:
Short bowel syndrome (SBS) is a malabsorptive condition that can result in intestinal failure (SBS-IF). Many patients with SBS-IF require home parenteral nutrition (PN) for survival. However, PN has profound effects on patients and their family members. The present study aimed to understand the lived experience of SBS-IF for patients and their families.METHODS:
In-depth semi-structured qualitative interviews were conducted with 15 patients with SBS-IF and five adult family members living with someone with SBS-IF. A patient-centric approach was taken, with a patient steering group providing input and guidance to develop the interview guide. Key concepts were identified using thematic analysis of interview transcripts.RESULTS:
Patients' lives were dominated by having SBS-IF. They described physical impacts that included patient-reported signs and symptoms and physical restrictions comprising of restrictions on daily life, actives of daily living and physical functioning. In addition, they encountered emotional impacts with a plethora of negative feelings and social impacts, such as difficulties socialising and maintaining relationships. Patients coped by adapting their life around SBS-IF, having support and adopting an attitude of gratitude and acceptance. Family members were also affected and, along with patients, appreciated the respite of a night off from infusions.CONCLUSIONS:
Patients and families face many difficulties with SBS-IF. Healthcare professionals can support patients by facilitating them explore what others have found beneficial; adapting their life around PN, viewing PN with acceptance and trying to cultivate gratitude. Further research into the support required for families may be beneficial.Palavras-chave
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Base de dados:
MEDLINE
Assunto principal:
Qualidade de Vida
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Síndrome do Intestino Curto
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Família
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Aceitação pelo Paciente de Cuidados de Saúde
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Nutrição Parenteral
Idioma:
En
Ano de publicação:
2020
Tipo de documento:
Article