Perceived needs of patients and family caregivers regarding home-based enteral nutritional therapy in South Africa: A qualitative study

Abstract

Introduction The need for specialized care, particularly enteral nutritional therapy in community settings is now increasing with implications for both patients and primary care providers. More research is needed to identify the needs of patients and primary caregivers. The study aimed to explore the perceived support needs regarding the provision of home-based enteral nutritional therapy among critically ill adult patients and family caregivers in the Kwa-Zulu-Natal Province of South Africa. Methods A qualitative study of purposely selected adult patients on homebased enteral nutritional therapy and family caregivers was conducted in a district hospital, a community health centre, two primary health care clinics and selected households in the KwaZulu-Natal Province, South Africa. Semi-structured individual interviews were conducted between June and September 2018 and the content analysis approach was used to analyse data. Results Two major themes and five subthemes emerged from the results of the interviews. The major themes concerned socioeconomic and psychosocial support needs related to the provision of home-based enteral nutritional therapy. Subthemes included the need for financial assistance, need for enteral nutrition products and supplementary supplies, need for infrastructure for continuity of care, and psychological support needs. Conclusion Results of this study confirm the need for developing strategies adapted to a South African context and yonder to meet patients' and family caregivers' needs with regard to nutritional services. More research on the identification of needs through monitoring and evaluation of

Experiences and needs of home caregivers for enteral nutrition: A systematic review of qualitative research

“…Ten studies were selected for a systematic review, including three from the United Kingdom and one from the United States, Singapore, South Africa, Israel, Italy, Canada and Swede. In these studies, the number of caregivers involved ranged from 4 to 30, a total of 158 caregivers (Alsaeed et al, 2018; Ang et al, 2019; Asiedu et al, 2018; Bjuresäter et al, 2012; Gil et al, 2018; Green et al, 2019; Green et al, 2019; Jukic et al, 2017; Mooi and Ncama, 2020; Penner et al, 2012). Qualitative research methods were used in all the studies, including structured or semi‐structured interviews.…”

“…All participants were home caregivers, most of them were family members of patients, and a few were employed caregivers (formal caregivers). These patients mainly needed enteral nutrition due to stroke (Mooi and Ncama, 2020), dementia, gastrointestinal tumour (Ang et al, 2019), neuromuscular disease (Mooi and Ncama, 2020) leading to the inability to eat or swallow normally, and malnutrition. The data of interest were evaluated and synthesized into three themes and seven subthemes (Figure 2).…”

“…Despite the education by healthcare professionals on enteral nutrition‐related issues and involvement throughout the treatment process, many caregivers still felt abandoned by the healthcare system, especially after patients left the hospital (Bjuresäter et al, 2012; Green et al, 2019; Green et al, 2019; Mooi and Ncama, 2020). Caregivers believed that improved healthcare system support could better meet caregivers' knowledge needs.…”

“…Most families expressed a need for social support to help caregivers deal with related problems and ease their family burden (Jukic et al, 2017; Mooi and Ncama, 2020). In one study (Mooi and Ncama, 2020), most families could not afford enteral nutrition and needed financial support to survive.…”

“…Most families expressed a need for social support to help caregivers deal with related problems and ease their family burden (Jukic et al, 2017; Mooi and Ncama, 2020). In one study (Mooi and Ncama, 2020), most families could not afford enteral nutrition and needed financial support to survive. In addition, caregivers hoped to obtain get help and support from social institutions, thus giving to give patients the opportunity to study and work outside the home, and to establish a corresponding infrastructure to ensure the care of patients (Jukic et al, 2017).…”