A recent review found that families caring for a loved one with kidney failure lack information and continuity of care from health care professionals.
Families caring for patients receiving comprehensive conservative care (CCC) for chronic kidney disease (CKD) often find themselves under psychological burden from uncertainty and anxiety linked to lack of knowledge on the diagnosis and prognosis of the disease, according to a review published in the Journal of Renal Care. The objective of this review was to understand the primary needs of families who care for loved ones who have a diagnosis of CKD and are receiving CCC, a holistic, patient-centered type of care that includes interventions to slow the progression of kidney disease and minimize complications, according to the review.
The authors conducted a qualitative literature review of available studies on the topic and performed a qualitative content analysis of the selected studies. The databases CINAHL, PubMed, and PsycINFO were used to search for studies on this topic that were published within the past 11 years and were written in either English or Spanish. Keywords family, needs, treatment, conservative, and CKD were used to find relevant studies.
To select the studies, 1 author read the articles by title and abstract or, if an abstract was not available, the entire study. Studies that focused on the needs of the family members who take care of a patient with kidney failure receiving CCC and were qualitative forms of literature, qualitative reviews of literature, or doctoral theses of a qualitative nature were considered for inclusion in the current review.
Two authors used the 10 questions of the Critical Appraisal Skills Programme (CASP) to assess the quality of the 5 studies that met the inclusion criteria. All were assigned positive answers to 9 of the 10 CASP questions. However, only 1 study was assigned an affirmative answer to the question, “Has the relationship between researcher and participants been adequately considered?”
A content analysis was performed using an inductive approach in which themes were not predefined from existing literature. The authors divided the results section of each of the studies using NVivo software, which grouped phrases, words, or paragraphs relevant to the study. These words were grouped into subthemes, which, in turn, were grouped into main themes.
Of the studies selected, 2 were from the United Kingdom, 1 was from the United States, 1 was from Canada, and 1 was from Thailand. Across the 5 studies, a total of 70 family caregivers participated. Most participants were listed as a spouse, partner, or daughter of the family member with CKD receiving CCC.
After the qualitative content analysis, 4 needs for family members caring for a patient with CKD receiving CCC were identified: informational, psychological, social, and spiritual.
The 5 studies indicated that knowledge was the main need of the families of these patients. Family members have demanded information about the symptoms of the disease, its management, and the expected evolution of the disease because they have difficulties understanding the initial diagnosis, treatment options, and expected course of the disease, according to the review. Family members also expressed uncertainty and insecurity about the worsening of the patient’s situation and their inability to manage it at home.
An aspect of the need for knowledge is the continuity of care for a patient receiving CCC. Continuity of care can foster a good relationship between the health care providers and the family, which makes getting information easier. According to the review, the same team of professionals should follow a patient throughout the process so that family members do not feel that they have to fend for themselves, as many family members reported feeling in the studies.
Family members of patients receiving CCC have expressed concerns about their ability to manage the disease over an extended period. Wariness of the expected course of the illness and treatment outcomes due to small improvements in their loved ones, contrary to nephrologists’ predictions, has caused family members to express frustration, disappointment, and panic.
Some family members expressed a feeling of guilt knowing that the end of their family member’s life was near, whereas others expressed guilt around their family member living longer than the initial prognosis, according to the review.
There was also a disparity in perspectives from different family members in 1 of the studies that the review cited. Some family members reported feeling a moral obligation to care for their family member. Others expressed a lack of understanding about the prognosis of CKD and an unwillingness to discuss the future due to confusion and anxiety. Others still used the lack of medical evidence on deteriorating condition as a reason to live in the present.
Family members felt that discussions with health care professionals about advanced care were necessary and a relief, as these discussions helped them plan for the future. However, they also felt that health care professionals should be the ones to initiate these conversations, according to the review.
Family members found it difficult to obtain in-home aid from social services and, even when they did secure such help, did not find the help adequate. Family caregivers also reported financial difficulties that prevented them from accessing health services regularly. Family members felt a lack of support for the patients at the end of their life, which had negative consequences, such as hopelessness and disappointment in health care services.
In the study from Thailand, family members reported that spirituality was an important source of support, both for the patients and themselves, as it helped them relieve tension, control their emotions, and feel at ease. It should be noted that this evaluation could arise from the cultural heterogeneity of the research reviewed, as religion is an essential part of Thailand’s culture and daily customs.
The authors of this review concluded that family members needed to be involved in making decisions on treatment options for patients with CKD. The lack of information made it hard for family members to accept CCC as a therapeutic option.
“Health care professionals must become aware that families demand greater empowerment and involvement throughout the entire process of care of the patient with kidney failure, from diagnosis to death, with an emphasis on prognostic clarity and impact on quality of life and in which the main objective is the reduction of suffering,” they continued.
The authors also wrote that families have experienced a feeling of abandonment by the responsible health care professionals when there is fragmented or disorganized care. Families have also had unmet social and psychological needs in the care of their family member. The authors of the review recommend the family nursing assessment using the Calgary model, in which “the nurse guides and assists the family in adapting to chronicity, dependency, or the end of life and promoting health.”
There were some limitations to this review. Some publications may not have been identified in the literature review due to language limitations. The studies used have been carried out in 4 countries with different cultures.
The authors of the review concluded that a paradigm shift in both society and the quality of health care received by the family members of patients with CKD receiving CCC is imperative. “It is necessary to stop seeing the family as a mere patient care resource and incorporate them into health processes,” they wrote.
Ania-González N, Martín-Martín J, Amezqueta-Goñi P, Vázquez-Calatayud M. The needs of families who care for individuals with kidney failure on comprehensive conservative care: a qualitative systematic review. J Ren Care. Published online February 28, 2022. doi:10.1111/jorc.12415