Long-term care services include a broad range of health, personal care, and supportive services that meet the needs of frail older people and other adults whose capacity for self-care is limited because of a chronic illness; injury; physical, cognitive, or mental disability; or other health-related conditions [1]. The process of long-term caregiving arises out of a relationship between a caregiver and a recipient with a certain level of dependency [2]. There are two kinds of caregiving: First is the formal care which is provided by paid regulated providers within a formal system. Second is the informal care which is provided by caregivers outside the boundaries of any formal system [3, 4].

Formal caregivers are clinicians and trained individuals who receive compensation to provide intermittent or continuous healthcare services [3]. On the other hand, informal caregivers are individuals, often family members, who provide care, typically unpaid, to someone with whom they have a personal relationship [5]. In this study, the term caregiver refers to informal caregivers unless otherwise specified.

Care recipients are individuals who depend on others to perform their daily activities due to incapacity resulting from aging or impairment, temporary or permanent. The most common forms of care received are assistance with activities of daily living (ADLs) or instrumental activities of daily living (IADLs) and care coordination, which involves figuring out what kind of care is needed, where to find care, and how to arrange for care [3].

Many of the very elderly lose their ability to live independently because of limited mobility, frailty, or other physical or mental health problems. They may require some form of long-term care, which can include home nursing, community care and assisted living, residential care, and long stays in hospitals [2]. In 2015, the World Health Organization (WHO) projected that between the years 2015 and 2050, the number of people aged 60 years and older is expected to double from 900 million (12%) to two billion (22%) [6] whereas its report on disability stated that around 785 million (15.6%) persons aged 15 years and older live with disabilities. Of those, 2.2% are estimated to have very significant difficulties in functioning [7]. In 2021, the WHO estimated that over one billion (15%) persons aged 15 years and older live with disability. Of those, 190 million (3.8%) have significant difficulties in functioning [5].

In developing countries, the number of older people who are no longer able to look after themselves is forecasted to quadruple by 2050 [8]. In Saudi Arabia, as well as globally, life expectancy is on the rise; from the period 1980–1985 to the period 2005–2010, it increased from 64.9 to 74.3 years and is projected to reach 81.8 years during the period 2045–2050 [9]. On the other hand, the number of individuals with disabilities in Saudi Arabia cannot be accurately estimated because the majority of the related surveys have focused on cross-sectional, community-based epidemiology [10]. However, it is estimated that 3.73% of the population have functional disabilities, which limit their independence [8]. Yet, according to a local study, the countrywide data from the demographic survey have indicated that about 0.8% of the total Saudi population have disabilities [9].

Globally, studies were conducted to investigate the support needed by informal caregivers of the elderly [10,11,12,13,14,15]. Although researchers had investigated caregiving in different societies, their findings were similar to a great extent. Mostly elderly care is provided at homes; some caregivers reported receiving little support while others provided the care with no support at all. Caregivers identified their role of caring to be a positive experience despite experiencing some difficulties during the caring process. Social support was pointed out a lot as an unsatisfied need along with, mainly in developing countries, financial support. Some mechanisms reported to be effective in enhancing the caregiving process were effective communication with the formal system, availability of information on the recipients’ conditions and needs, receiving training on the essentials of caregiving, and respite care [12,13,14,15,16,17].

Furthermore, prior studies investigated the needs of informal caregivers who provided care for individuals with needs that vary from transitory conditions to long-lasting impairments such as cancer, AIDS, autism, and organ transplant [18,19,20,21,22,23,24,25]. The surveyed caregivers were expecting greater support from the healthcare system especially when caring for individuals with medical conditions that involve some sort of medical intervention. Regardless of the study location, most of the findings reported unmet needs of the informal caregivers such as social support, emotional support, and financial support, in addition to an emphasized need for training courses on the caring process.

However, except for a few studies, the reviewed literature revealed findings representing experiences within systems other than the Saudi health system where most of them had investigated the needs among relatives, rather than caregivers, of individuals who have been cared for by formal caregivers in either a hospital or other formal healthcare settings [26,27,28].

Informal caregivers are a critical resource to their care recipients and an essential component of the healthcare system worldwide, yet their role and importance to the society have only recently been appreciated. In Saudi Arabia, informal caregivers are still unrecognized as concluded by a local study conducted in 2016 [29]. This study aimed to investigate the experience of caregivers in informal settings within the Saudi society through identifying the caregivers’ s needs along with their expectations of the formal system.