Supportive care needs of the family caregivers of urostomy patients: a qualitative study

Extreme anxiety is an emotional state. Its main performance is excessive and persistent worry about what may happen in the future, far exceeding normal worry. Panic is a more intense emotional response. It usually happens suddenly, and people will feel extreme fear and fear, as if they are about to face great danger.All participants stated experiencing anxiety and panic, although they also stated that, with time, this negative emotion gradually subsided.
“I feel devastated. I do not know what to do with my father’s future life.” (ID 6).
“I do not know if I can afford the treatment. At the core of my heart, I feel like escaping from this situation. I do not know who I can receive help from.” (ID 22).
“What should I do? I can’t handle urinary ostomy and change urinary catheter. I’m afraid when I see that stoma.”(ID 4).
Sub-theme: feeling out of sorts
This is an unpleasant sensory experience.The respondents distinctly stated that they were unwell because of their bad mood. They felt they were in a sub-health state, although this discomfort, as they felt, had to be hidden from others to prevent causing any worry to the patients.
“I have developed insomnia since I have begun taking care of my husband, and this has been too painful for me.” (ID 19).
“I feel very tired every day and need to take care of several things, such as my father’s diet, etc.” (ID 3).
“Since I took care of my father, I can hardly eat anything. I have no desire to eat, so I have lost a lot of weight, but it is unhealthy.”(ID 18).
Theme 2: eagerness for receiving information regarding the patient’s diseases
Disease information refers to the collection of knowledge about diseases.“Urgent need to master their patient caregiving skills”and“Need for financial assistance for dealing with the disease”are identified as sub-theme.Several interviewees stated that they did not have adequate information regarding the patient’s diseases to make informed decisions.
Sub-theme: urgent need to master their patient caregiving skills
Caregiving skills refer to a series of abilities in taking care of the daily life and physical and mental health of urostomy patients.All participants stated that it is crucial to have adequate information regarding the disease, without which, they feel helpless and on the verge of collapse.
“I just came out of the hospital and I feel I am on the verge of collapsing. I do not understand how to replace the urostomy bag.” (ID 16).
“How would my father bathe? When would he need a reexamination? What should be his diet? I know nothing about these things.” (ID 5).
“My father has been very depressed since he finished the operation. I especially want to give my father some confidence and make him optimistic about life again. But I don’t know how to do it.” (ID 13).
Sub-theme: need for financial assistance for dealing with the disease
In this study, financial assistance refers to providing help to family caregivers of urostomy in the form of money or material.Financial problems are unavoidable for every family. Few families are able to cope with these problems with ease.
“This surgery cost me all my savings. Therefore, I wish a portion of the cost of this surgery would be reimbursed through my father’s medical insurance.” (ID 12).
“I need to pay for my mortgage, car loan, and children’s education every month. My father’s illness increased my already burdensome financial conditions.” (ID 21).
“I have five brothers and sisters, and each of them bears a portion of my father’s treatment expenses.” (ID 10).
Theme 3: need for social support
Social support refers to the spiritual and material support that individuals get from the social relations they have. “Need for social support” and “It is beneficial to establish an exchange group for the family members of patients” are identified as sub-theme. Participants stated that patients who have experienced such great changes in life need assistance from their families and help from society as well.
Sub-theme: it is beneficial to establish an exchange group for the family members of patients
Exchange group is a group composed of patients’ families, in which family members can share their experiences, feelings, difficulties and coping strategies.It is necessary to communicate with the family members of patients as communication might effectively alleviate the anxiety of the family caregivers and improve their home care skills.
“I learned immensely regarding the complications of the disease in the exchange group of patients’ families, and this was quite useful to me.” (ID 1).
“I befriended several people in the patient exchange group, and I did not remain pessimistic and anxious after that.” (ID 11).
“I shared a good way to prevent skin complications with other patients’ families, and I was very happy, so we should hold a group to keep warm.” (ID 21).
Sub-theme: community support is crucial
In this study, community support refers to all kinds of help and resources provided by the community for caregivers.The community could exhibit a more tolerant attitude toward patients and their families, and this would allow patients to return to society and normal socialization with ease.
“Community workers undertook an initiative to assist my father in adapting to his new life by, for example, inviting him to participate in a calligraphy competition.I think from the bottom of my heart that community support is crucial.” (ID 7).
“Doctors and nurses in the community regularly inquired regarding my father’s condition and provided guidance.” (ID 13).
“Community volunteers visit my father at home regularly, and they tell me the main points and precautions of nursing.”(ID 11).
Theme 4: necessity of spiritual support
Spiritual support is an act of giving others psychological encouragement, comfort and affirmation.Spiritual support is necessary for family caregivers as caregiving is a long and arduous process requiring great adjustments in the mentality of these caregivers.
Sub-theme: praise from friends and relatives encourages caregivers
Praise from relatives and friends refers to affirmation and praise from relatives and friends. This kind of praise is usually based on the recognition of a person’s quality and behavior. Relatives and friends could serve as a source of great motivation. The respondents expressed that such praise is important to them for encouragement to continue taking care of their sick family members.
“My father encouraged me to be a filial daughter and appreciated my efforts. I took care of my mother at home, and the laughter and joy at home increased.” (ID 2).
“My neighbors and friends felt moved when they learned that I sacrificed my job to take care of my father. They developed a positive outlook on me, which benefited me immensely. One of my neighbors is a reporter, and she even said that she wanted to report my story.” (ID 12).
“My brother always encourages me. He believes that I can take care of my mother’s diet and daily life. My brother will praise me when I keep my house tidy.”(ID 3).
Sub-theme: realizing self-value is important for caregivers
Realizing self-value refers to the process in which individuals achieve their goals by exerting their own abilities and potentials and have a positive impact on themselves and the world around them. It is an obligation to take care of sick parents, similar to the responsibility of taking care of one’s children. Parents raise their children, and when parents need their children to take care of them, children should not refuse.
“It is my duty to take care of my father. I cook and wash clothes for my father every day. I also remind him to take his medicines. His condition is improving with time, and that makes me feel satisfied.” (ID 5).
“My daughter considers me her role model and almost worships me. She says she would be filial to her mother like me in the future.” (ID 13).
“There’s a saying in China that raising children for old age.Father said I was a filial son.”(ID 4).

Affinity diagram showing four themes and subthemes concerning supportive care needs of family caregivers with urostomy patients.
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