Description of Participants Demographic Characteristics
The study participants were twelve (12) in number and aged between 27 – 67 years. The family caregivers included six (6) spouses and six (6) children of the patients. The number of years of marriage by spouses were between 10- 30 years with children. Two of the participants had children before marrying their husbands. And some of the patients also had children before marrying their present spouses. These spouses had between one to five children with their present spouses. The six children who took up the caring role were five females and a male. Four females out of those five were married with children whereas one was not married but in a serious relationship. The male was also not married but in a relationship. All participants were Ghanaians and Christians. Two participants were government workers on retirement. One participant was a seamstress, four were petty traders, two were farmers and three were professionals of which one is a mental health nurse awaiting posting, a teacher and a secretary. The duration of care was between 6 months - 2 years. Most participants preferred to speak Fante which was their native language. However, other participants also spoke several other languages such as English, Ga and Twi. Four of the interviews were completed in participants home. Eight took place within the hospital premises. Five of the patients of these caregivers were on admission and the rest were at home. Nine of the participants were sole caregivers whereas three had assistance occasionally from others/family members. The residential location for these family caregivers within the Cape Coast Metropolis varied between urban and rural settlements (see Table 1).
Table 1: Participants Demographic Characteristics
Pseudonyms
|
Age
|
Sex
|
Marital status
|
Religion
|
Educational level
|
Relationship to patient
|
Duration of Care
|
Occupation
|
Love
|
38 yrs
|
Female
|
Married
|
Christian
|
JHS
|
Father
|
2 years
|
Seamstress
|
Peace
|
36 yrs
|
Female
|
Not Married
|
Christian
|
Tertiary
|
Father
|
1 year
|
Secretary
|
Grace
|
29 yrs
|
Female
|
Married
|
Christian
|
Tertiary
|
Father
|
1 year
|
Nurse (Awaiting postings)
|
Joy
|
58 yrs
|
Female
|
Married
|
Christian
|
Primary
|
Husband
|
1 year
|
Trader
|
Mercy
|
67 yrs
|
Female
|
Married
|
Christian
|
Tertiary
|
Husband
|
2 year
|
Retired
|
Forgive
|
62 yrs
|
Female
|
Married
|
Christian
|
Tertiary
|
Husband
|
1 year
|
Retired
|
Favour
|
41 yrs
|
Female
|
Married
|
Christian
|
SHS
|
Father
|
1 year
|
Trader
|
Humble
|
62 yrs
|
Female
|
Married
|
Christian
|
Illiterate
|
Husband
|
1 year
|
Farmer
|
Passion
|
60 yrs
|
Female
|
Married
|
Christian
|
Illiterate
|
Husband
|
1 year
|
Farmer
|
Kindness
|
64 yrs
|
Female
|
Married
|
Christian
|
Tertiary
|
Husband
|
2 years
|
Trader
|
Hope
|
27 yrs
|
Male
|
Not Married
|
Christian
|
Tertiary
|
Father
|
6 months
|
Teacher
|
Faith
|
40 yrs
|
Female
|
Married
|
Christian
|
Illiterate
|
Father
|
1 year
|
Trader
|
Family caregivers of prostate cancer patients face multiple barriers which impact their quality of life and well-being. These caregivers described the caregiving role as a very intense experience. Findings from the study show that participants encountered several difficulties due to lack of skills and knowledge to care for these patients thus making it difficult for them to meet the care demands. Sub-themes that emerged were; lack of preparedness towards the caring role, lack of knowledge about condition/treatment, misconception about the condition, financial constraints, poor communication, lack of accommodation facilities and poor staff attitude (see Table 2)
Table 2: Showing Themes and Sub-themes
Main Themes
|
Sub-themes
|
Theme 1: Education and Training
|
Lack of preparedness towards the caring role
|
|
Lack of knowledge about condition/ treatment
|
|
Misconceptions about condition
|
Theme 2: Resources
|
Financial constraints
|
|
Lack of accommodation facilities
|
Theme 3: Caregiver-Nurse Relationship
|
Poor communication
|
|
Poor staff attitude
|
|
|
Theme 1: Education and Training Needs
This theme describes caregivers education and training needs impacts on their caring roles. Emerging subthemes include lack of preparedness, lack of knowledge of the condition and misconceptions about the condition,
Lack of Preparedness towards Caring Role
Preparedness in this study has to do with a caregiver's perceived readiness for the caregiving role, which encompasses multiple domains, including the provision of physical care, and emotional support. Preparing the family caregiver towards the caring role is an important area that needs to be addressed by health professional especially nurses. Yet too often these family caregivers are poorly prepared for this vital but difficult role that takes a toll on them, by extension, the patient. Participants in the present study reported not asked by healthcare professionals what they needed to care for the patient. They stated
“No one explained to us what was happening. Also, in terms of how to care for him at home, no one thought us how-to, not even the nurses” Love
“The only thing they told us about was in connection with the administration of the medication at home and the date for review. Even that, he was the one who was told, not us" Peace
“No one educated us on how to take care of him at home” Grace
"During our stay in the hospital, none of the nurses explain to us how to care for him at home upon discharge” Joy
“No one took the time to explain to us, how to care for him at home”
Mercy
“No one educated me on how to go about things at home, and because of that, it is a problem, as I find myself in a fix, not knowing what to do for him sometimes especially when he is in pain. But we were told how to administer the medications. No one mentioned any side effect that may result from the administration of any of the medications” Forgive
“They educated us on how to administer the medications. But nothing else” Humble
Lack of Knowledge about Condition/Treatment
Caregivers have become part of the triad of care. Effective caregiving and decision making requires that they understand the course of disease/ treatment and resources available to them. Their ability to care for their patients may be hampered by their lack of understanding of the disease and treatment patient receive as well as resources. Some participants reported a lack of knowledge about the condition and treatment resulting in the patient going through a lot of pain. Others also reported confusion as a result of a lack of adequate education on the condition and treatment. Whereas, others reported having received adequate education on the condition and treatment. All participants again reported not being informed about resources available.
Lack of knowledge about the condition and treatment resulted in confusion
“One thing I've always wanted to ask is that people say the man is old so doctors telling us that he needs surgery is all lies. They just want to take our money” love
“I suggest that in situations of this sort the patient and relations should be educated on what is going on. For instance, when we came, all we were told was he has prostate cancer. Today too, we have just been told that he will have orchidectomy…Laughing. No one is explaining things to us. They tell you these big words without breaking them down for you to understand” Grace
Participant lack of education on condition and treatment resulted in the patient going through a lot of pain
“…One more thing is that initially we were not told that the catheter must be changed after some time. No one informed us about that, so he had it on for a long time and this resulted in pain. The catheter stayed in over a month and two weeks. When it should have been in there for just three weeks and then changed at the hospital” Peace
Participant, however, received education on condition and treatment
“The doctor explained everything about the condition before surgery. The things he will need for the surgery were communicated to us. Also, upon discharge, we were told how to administer the medications at home” Mercy
Participant did not receive any education but read about it from the internet
“No one but what I do is I read around the condition and also on the medications from the internet. Apart from consulting our family doctor friend” Hope
All participants reported not being informed about resources available to them by healthcare personals such as counselling services. They stated that
“I have never been to a counsellor before, wasn't aware they existed in this hospital” Favour
“I have not visited a counsellor. I am not aware of their services. More so I cannot afford their services” Humble
“I have never sought counselling services anywhere; I didn't even
know there is something of that sort in this hospital” Passion
Misconception about the condition
One of the challenges that family caregivers encounter in the process of caring for their relations with prostate cancer has to do with the beliefs and misconceptions people have about the condition. It has become clear that cancer-related stigma and myths are important problems that must be addressed. Findings from this study show that there is evidence of myths associated with cancer such as the belief that cancer is a fatal and contagious disease. Others also believe that one may contract it as a result of immoral behaviour or a punishment from God or ones' enemies. Family caregivers reported that these misconceptions lead to fear/panic and also a decrease in the support network.
“People say it is a condition that has no cure so I was scared when I first heard he has cancer” Love
“Eeeii… in my place when you hear cancer it means that the person is going to die. You are waiting to die. Others don't even want to hear the word at all. Some also say it is infectious. So, after telling them, you will notice that they begin to isolate themselves from you and the patient” Grace
“Because it is a condition that kills” Mercy
Participant believes that cancer may result from something bad done in the past/ evil done to others
“Anything may be the cause. Currently, the world is being ruled by the devil, so anything can happen. Someone may contract a condition as a result of something done in the past. Others, from their enemies” Forgive
“Because I know it is not a good illness, it mostly kills its victims” Favour
“Because some people say it is infectious, others also say it kills its victims within a short time” Kindness
“What I know about cancer is that it is a wound that develops inside the body, so when you are put on medications for some time you get cured and that is all. But when we came here, we were told that he was going to have the surgery because of cancer and that got me worried. Meaning, I was wrong about the condition. I also heard that it can kill and the fact that my husband is going through so much pain because of this cancer is also something that tells me that cancer is much more serious than I thought” Passion
Theme 2: Resources
Limited resources were reported as barriers to caregivers roles. Relevant themes that emerged include; financial constraints and lack of accommodation,
Financial constraint
All participants admitted having financial difficulties. Some mentioned that it resulted in a delay in treatment causing the patient to go through so much pain. Others had to try herbal preparation which made the condition worse. One participant mentioned that the government must be able to support because most of the patients were retirees.
“We were required to deposit Ghc1000, that same day so that the surgery can be done the following day but unfortunately for us, we could not raise the amount so we had to go back and come after we raised the money” Love
“In the beginning, I took a loan, because I had spent all my money on medical expenses” Peace
“Earlier on I made mention that, he told the doctor that financing the treatment is now a problem so if there is an alternative, he may want to try that, but the doctor said no, and that he should get the money and return to continue with the treatment. He then decided to start herbal treatment at home, it helped with the pains to some extent but was not very effective because urination was difficult. He continued with the herbal medications despite no improvement in the
condition. He tried about four different herbal facilities” Forgive.
Participant complained of financial difficulties and also lack of support from the government
“Another issue has to do with money, the little money we raise must go into this sickness. Either we are buying medications or paying for hospital bills and lab test. We are both retired. Besides, I believe that as pensioners some of the medications must be free, we have served the country our entire life. The national health does not cover most of the investigations. At our age, we don't have money, the government must do something about it” Mercy.
“I sleep here because of the money involved in going home and returning every day. My home is a bit far, so If I have to always go and return it will be very expensive” Humble.
“At the moment, we need financial support. We have spent all our monies and savings on this condition. My children are in school and I need to pay fees” Favour
Lack of accommodation facilities
Some of the participants said that the hospital where their patient received treatment was far from their home, which was tiring for them to commute to and from the hospital when their patients are on admission as it resulted in financial difficulties from the high expenses on transportation to and from the hospital. Besides, the hospital did not provide caregivers with any place to stay, resulting in them sleeping outside the wards, on the floor and being exposed to poor conditions and mosquito bites. Some caregivers stated:
“My home is quite far, so if I have to always go and return it will be very expensive. Again, the hospital has not provided a place for us, we sleep outside on the floor and exposed to mosquito bites” Humble
“Even me... I would have stayed if there was a place I could spend the night. The hospital has no place for caregivers who have their patients on admission, we have to sleep outside on the floor, yet, if there is something to be done for the patient and you are not around it won't be done until you return” Love
Theme 3: Caregiver-Nurse Relationship
A good nurse-caregiver relationship has therapeutic benefits however, participants reported concerns in this regards. Sub-themes that emerged include poor communication between caregiver and nurses and poor nurse attitude towards caregivers.
Poor communication
A primary role of cancer family caregivers involves interacting with various providers and professionals on behalf of their loved one. Lack of effective communication between healthcare personnel and family caregivers is an important issue, particularly because it can lead to errors and poor patient outcomes. Findings from the study show that patients went through avoidable pains as a result of ineffective communication. Also, resulted in an unnecessary waste of resources and the feeling of inadequacy.
Participants reported poor communication as follows:
“By the grace of God, we were able to raise money for the surgery. However, the date scheduled for the surgery was cancelled after all preparations made, we were then asked to send my dad home. The reason for the cancellation was not communicated to any of us yet he was discharged to be brought back a week later. We still had to pay for the discharge.” Love
“Initially we were not told that the catheter must be changed after some time. No one informed us about that, so he had it on for a long time and this resulted in pain. The catheter stayed in over a month and two weeks. When it should have been in there for just three weeks” Peace
“Sometimes I don't even know what to do to help him because no one told me anything” Passion
As if the challenges encountered by these family caregivers are not enough; even within the health care environment are faced with even more difficulties which further impact on their role. Family caregivers encounter many difficulties within the hospital environment that affect the care they provide to their patients. Healthcare environment/ professionals especially nurses are insensitive to these unmet needs and thus, are not able to provide them with the necessary support to effectively provide the care expected of them. Participants shared their experience on the challenges they encountered within the hospital environment
Poor Staff Attitude
Providing quality care involves doing the right thing at the right time, and improving the health outcome for both patients, their family caregivers as well as the community at large. It is also important that a welcoming atmosphere within the healthcare environment is ensured. However, this is mostly not the situation. Participants complained of poor staff attitude and unfavourable conditions within the healthcare environment which affected the role they played negatively. Some of the caregivers complained that they had to wait long hours at the Out Patient Department (OPD) before the clinic started, others complained of poor staff attitude making it impossible to for them to be approached. One participant also pleaded that conditions be improved concerning the neglect of care when family caregivers are not around.
A wife of one of the patients’ stated:
“When we visit the hospital, there is too much waiting time. We come very early but the clinic does not start early at all. They must try and do something about it for us. Because we are already exhausted and some of the patients are also in pain and very sick” Mercy
Another participant also mentioned
“Also, to the hospital staff, especially the nurses and doctors, I know with every work there is time to start. They must report at the right time because patients come to the hospital and wait for a long time before they are seen. They must also watch how they relate to the patients and their relatives especially the nurse. Their attitude makes it difficult for us to even ask them for anything” Forgive
"Another issue has to do with some of the nurses, some are very disrespectful. They must change their attitude towards caregivers and patients. Because sometimes we want to ask them to clarify something but we are not able to, for fear of being embarrassed” Kindness
Participants complained of staff neglecting patients in the absence of family caregivers
“Please I would like to plead with the ward staff that if there is anything that needs to be done for our patients about their treatment, they should do it so that when the relatives come around they can pay for them, rather than neglect the patients when the relatives have been sent out of the unit. It is very frustrating” Faith
Participant complained about lack of support from hospital staff
"Mostly when we come, I have to do all the errands, go here, go there, and also wheel him around all by myself so this time my son was home so we came with him. Formally, some orderlies help relatives with wheeling of patients but now they don't do it anymore. You can just imagine that if I had not come along with my son what I was going to do because I couldn't have wheeled him around in this state" Forgive
Participant, however, commended the nurses for their good work
She stated “aww, the nurses did very well, they treated the situation with urgency. Immediately, they called the doctor and put him in bed and started with treatment” Mercy