The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review
| Autor: | Alan K Y Teoh, Alison J. Hey-Cunningham, Ian Glaspole, John T. Price, Tamera J. Corte, Jamie Maloney, Yet H. Khor, Joanna Y T Lee, Lissa Spencer, Alice Watson, Gabriella Tikellis, Anne E Holland, Debra G. Sandford, Gregory J. Keir, Nicole S L Goh |
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| Rok vydání: | 2020 |
| Předmět: |
Pulmonary and Respiratory Medicine
Health Knowledge Attitudes Practice medicine.medical_specialty Pulmonary Fibrosis Emotions Peer support Health Services Accessibility 03 medical and health sciences Social support 0302 clinical medicine Cost of Illness Patient Education as Topic Patient-Centered Care Adaptation Psychological Pulmonary fibrosis Humans Medicine 030212 general & internal medicine lcsh:RC705-779 Health Services Needs and Demand business.industry Interstitial lung disease Social Support lcsh:Diseases of the respiratory system Prognosis medicine.disease Mental health Caregivers 030228 respiratory system Family medicine Needs assessment Anxiety medicine.symptom business Psychosocial Needs Assessment |
| Zdroj: | European Respiratory Review, Vol 29, Iss 156 (2020) |
| ISSN: | 1600-0617 0905-9180 |
| DOI: | 10.1183/16000617.0125-2019 |
| Popis: | BackgroundPeople with pulmonary fibrosis often experience a protracted time to diagnosis, high symptom burden and limited disease information. This review aimed to identify the supportive care needs reported by people with pulmonary fibrosis and their caregivers.MethodsA systematic review was conducted according to PRISMA guidelines. Studies that investigated the supportive care needs of people with pulmonary fibrosis or their caregivers were included. Supportive care needs were extracted and mapped to eight pre-specified domains using a framework synthesis method.ResultsA total of 35 studies were included. The most frequently reported needs were in the domain of information/education, including information on supplemental oxygen, disease progression and prognosis, pharmacological treatments and end-of-life planning. Psychosocial/emotional needs were also frequently reported, including management of anxiety, anger, sadness and fear. An additional domain of “access to care” was identified that had not been specified a priori; this included access to peer support, psychological support, specialist centres and support for families of people with pulmonary fibrosis.ConclusionPeople with pulmonary fibrosis report many unmet needs for supportive care, particularly related to insufficient information and lack of psychosocial support. These data can inform the development of comprehensive care models for people with pulmonary fibrosis and their loved ones. |
| Databáze: | OpenAIRE |
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