Abstract:
In response to the high prevalence of Chronic Kidney Disease of Unknown Aetiology (CKDu), Sri Lankan government has introduced welfare mechanism to support patients and their families. This mechanism is mainly financial. But there are concerns whether the benefits of such mechanisms actually reach needed groups and whether the available support mechanism actually addresses the needs of effected families. This study aimed to explore perception of CKDu patients and their families on available support services and the ype of support they really need. A qualitative study was conducted with the participation of CKDu patients and family members in Anuradhapura district of Sri Lanka. Participants were purposely selected and in-depth interviews were conducted with the patients and family members. Recordings from interviews were transcribed and used for thematic analysis together with the notes taken during home visits. Twenty patients were included in this study representing moderate to severe disease status. Four main themes were identified from the analysis; (01) Lack of trust on health care system, (02) receiving support to survive (the situation), (03) suffering of patients & families, CKDu and (04) poverty: losing capability. The theme; receiving support to survive (the situation); highlights the perception of patients on available support mechanism, and their expectations. Some individuals in need seemed missed out from receiving monthly government allowance to support treatment costs as one member of their families work in the government sector. Other than this main organized support mechanism, some have access to ad-hoc support from community groups, but not all. Participants valued support to establish regular income than allowances. Although there was no organized psychological or emotional support available, participants highlighted that they need psychological support. Such a need is mostly felt ; just after the diagnosis with CKDu, when they have to decide on starting dialysis ( Kidney functions has become in-significant, and when they have to decide whether to stop dialysis (no hope of survival). But this has not being considered for any supportive services currently available. This study reveals that current financial support systems fails to reach needy individuals. Lack of organized programs on emotional and psychological support for patients and families was highlighted. Empowering CKDu effected families to establish regular income and providing them with essential psychological support would prevent them falling in to extreme poverty and minimize the impact of children.