Perspective of informal carers on a home-based physical activity programme (iLiFE) for individuals with interstitial lung disease.

BACKGROUND

Home-based physical activity (PA) programmes may help address barriers to regular PA and benefit individuals with interstitial lung disease (ILD) and their informal carer (IC). However, research on ICs perspectives regarding these interventions remains limited.

OBJECTIVE

Explore the impact of a home-based PA programme (iLiFE) for individuals with ILD, from the perspective of their IC.

METHODS

A qualitative study nested in the iLiFE trial (NCT04224233) was conducted. Data of IC on PA levels - steps/day with accelerometer, support needs with Carer Support Needs Assessment Tool (CSNAT) and quality of life with World Health Organization Quality of Life Assessment - short version (WHOQoL-Bref) were collected to characterise the sample. Short, individual, semi-structured interviews were conducted with ICs. Interviews were audio recorded, transcribed and analysed thematically.

RESULTS

Nine ICs (72±8years, 5 [55.6%] male) participated. They were physically inactive (3819±1782steps/day); their main need in CSNAT was "knowing who to contact if they are concerned about their relative"; and presented poor/unsatisfactory quality of life (WHOQol-Bref Physical domain: 49±10points; Psychological domain: 58±10points; Social domain: 63±18points; Environmental domain: 51±14points). Thematic analysis revealed that, from ICs' perspective, iLiFE programme improved ICs well-being, couple relationships, ILD patients' health, and reduced caregiving burden. Despite patient's fatigue, participants valued health professionals support and expressed interest in extending the programme duration.

CONCLUSION

Home-based PA programmes, not specifically targeted at ICs of ILD individuals, may have some positive impact on their perceived well-being and burden of care. Further research on empowering ICs is needed, given their fundamental role in ILD management.