Abstract
ABSTRACT Purpose Informal carers have an important role in society through their care and support of their long-term ill relatives. Providing informal care is challenging and can lead to caregiver burden; moreover, many support needs of the carers are not met, leading to confusion, disappointment and frustration. We conducted an interview study to clarify the meaning of support given and received by informal carers to relatives with chronic obstructive pulmonary disease or chronic heart failure. Methods We purposively selected and recruited informants via participants in another study, thereby conducting interviews over the phone from June 2016 to May 2017. In total, we conducted 14 interviews with 12 informants. All interviews were transcribed verbatim and the content was analysed using a phenomenological hermeneutical approach. Result and conclusion Our comprehensive understanding of the meaning of support for these carers is twofold: it is a self-evident struggle for the good life of their relatives and that they want to be carers in partnership. The healthcare system must recognize the efforts of carers and include them in the strategic planning and operational stages of care and treatment for people with long-term illness.
Highlights
The support that family or friends give to people living with a long-term illness is of paramount importance
Informal carers play a significant role in supporting patients with chronic obstructive pulmonary disease (COPD) or chronic heart failure (CHF) in their self-care capability (Bryant et al, 2016; Buck et al, 2018; Kitko et al, 2020)
Swedish law and recommendations says that these informal carers are to be supported in their turn by the municipality they live in; this support can be for example, support and information groups, home-care or assistance or respite care (Eurocarers, 2021)
Summary
The support that family or friends give to people living with a long-term illness is of paramount importance. In Europe, surveys show that one in three people provide care to a closely connected person (i.e., family members and persons with whom you have a close asso ciation) who has a long-term illness, disability or pro blems associated with old age. In Sweden, where this study was conducted, it is estimated that almost 40% of those above 18 years provides help, support and care on a regular basis (Verbakel et al, 2017). Verbakel et al (2017) describe the prevalence of what they define as intensive caregiving, that one spends 11 hours or more per week on caregiving, and they estimates that 4.5% of those 25 years or older belongs to this category in Sweden Swedish law and recommendations says that these informal carers are to be supported in their turn by the municipality they live in; this support can be for example, support and information groups, home-care or assistance or respite care (Eurocarers, 2021). Verbakel et al (2017) describe the prevalence of what they define as intensive caregiving, that one spends 11 hours or more per week on caregiving, and they estimates that 4.5% of those 25 years or older belongs to this category in Sweden
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call
