The lives of partners and family members are often affected by a person's health condition, but this important impact is often not taken into account. Researchers at Cardiff University have created a simple questionnaire, the 'Family Reported Outcome Measure' (FROM-16) to measure this impact.
Understandably the patient is the focus at hospital appointments, but I think it's important to consider their loved ones too. Pulmonary fibrosis affects the whole family.
The questionnaire needs further testing before it can be used by clinicians to help them understand the issues, and to try to give the right kind of support to family members and partners. The study aims to gather information about the impact of having someone in the family with a disease on the quality of life of family members or partner of the patient. The researchers hope that the information from the study will encourage improved patient and family care, and help clinicians to choose treatments that better suit the needs of the patient and family members.
The researchers invite people affected by pulmonary fibrosis and their partners or other family members (aged at least 18 years) to complete the 5-minute survey.
The study questionnaire is aimed at capturing the current impact on carers and family members whose loved one is living with pulmonary fibrosis. We understand that bereaved family members have meaningful insights to share, but sadly, the current study is looking for "in the moment" responses. We hope to bring further opportunities to get involved in research in the future.
Further details about this study can be found here. Closing Date 30th September 2021.
This post provides information about an opportunity to participate in research. More detailed information about the study can be found by following the link provided. If you have any questions about the research study, please contact the researchers directly.
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