The needs of informal caregivers of people with ILD

Abstract

Interstitial lung disease (ILD) is a highly disabling chronic respiratory disease characterised by significant morbidity and mortality. People with ILD experience severe symptoms (e.g., dyspnea, fatigue, cough) which impair their ability to perform everyday tasks and maintain independence. Informal caregivers play a key role providing them support and assistance, especially at advanced stages. Nevertheless, knowledge about the support needs of caregivers of this population is lacking. This study aimed to characterise the needs of informal caregivers of people with ILD. An exploratory cross-sectional study was conducted. Informal caregivers were identified from participants with ILD from iLiFE study (NCT04224233). Information about the care provision, i.e., relationship with the patient and if she/he lived with the patient, number of people involved in the care and duration and type of care was collected. The carers’ support needs were assessed with the Carers Support Needs Assessment Tool (CSNAT). The CSNAT is a comprehensive, but brief and practical tool, which comprises 14 questions assessing the need for more support. It is scored as: 0-no, 1-little more, 2-quite a bit more and 3-very much more. For the purpose of this study, a need was considered if any score other than “no” was registered. Descriptive statistics were used to analyse data. Sixteen informal caregivers (62.5% female, 61±15 years) were included. Most were partners (75%), lived with the patient (87.5%) and were the only ones involved in the care (70%). 44% of informal caregivers had been providing care from more than 4 years. The main types of care provided included: housework (75%), accompaniment to medical appointments (75%), transportation (56.3%), personal care (50%), shopping (50%) and drug management (43.8%). Most informal caregivers need more support to know what to expect in the future when caring for the relative (62.5%), who to contact if concerned about the relative (56.2%) and to understand the disease of their relatives/managing relative’s symptoms (43.8%). Informal caregivers also wanted more support with dealing with their feelings and worries (50%). The findings from our study may help to personalise interventions to support informal caregivers of people with ILD, ultimately contributing to improve their well-being and care experience. Based on our results, these interventions should include information about the disease trajectory and emergency contacts, but also support for caregivers’ direct needs (e.g., feelings and concerns). A study with a larger sample size is needed to confirm our results.