RESUMO
BACKGROUND: The alarming increase in prevalence of dialysis-requiring kidney disease is a major health concern in the country. With more patients undergoing dialysis, more families are also exposed to the stresses of caregiving. The aim of this study was to investigate the impact of dialysis-requiring kidney disease on the quality of life of the patient's family. Information on the magnitude and areas of impact is essential in developing strategies to support the family.METHODS: Data were obtained from pre-tested, structured, close ended questionnaires completed by 60 family members of kidney disease patients on dialysis at Holy Child Hospital from October 16 to November 30, 2015. Analysis was carried out using the GNU PSPP software.RESULTS: Most family members were female (77%), the spouse of the patient (34%) or the child (30%), and living with the patient (70%). Eighty-nine percent were directly involved in patient care; 55% held the role of the main caregiver. Ten key themes were investigated and the areas of negative impact by magnitude are: Emotional Impact (100%) citing worry, stress, and frustration; Financial Impact (100%) citing medical bills as the most burdensome; Family Relationships (82%) citing increased stress and tension; Sleep & Health (64%) citing sleep loss from having to wake to assist the patient; Daily Activities (63%) seeing caregiving as a burden; Social Life (58%) citing guilt feeling as a hindrance to socialization; Time Planning (57%) with the unpredictability of the patient's symptoms being the main cause of not being able to make plans; Holidays (48%) blaming appointments for not being able to go on vacation; Work & Study (43%) citing lack of focus; and Support & Medical Care (42%) citing lack of support from other family members. Positive effects were also identified with 90% reporting strengthened personal relationship with the family, 83% having more awareness of their diet, 80% having strengthened faith, and 77% noting a closer family as a result. Relationships between these themes were discussed.CONCLUSION: As revealed, dialysis-requiring kidney disease has several negative impacts on the quality of life of involved families. If left neglected, the family, instead of being a resource in patient care, may become a barrier. Strategies to employ the positive effects as enablers in managing the areas of negative impact must be developed to provide appropriate support for the patient and the family unit.