Patient and caregiver Sociodemographic Facts
The Patients were %40,9 between the ages of 40–60 and 50% were over 60. Only 21,2% were university graduates. More than half were married (%63,6) and nearly half were retired 45,5%. Every patient had been given hormone therapy. 33,3% had undergone surgery, 19,7% had undergone radiation therapy and 22,7’ % had been given chemotherapy. 63,7% had a score of more than 80points on the Karnofsky scale (Table 1).
Medical Information
|
|
n
|
%
|
Table 1
Patients’ diagnosis. Patients’ Symptoms on treatment distribution (N = 66)
Diagnosis Period
|
1–3 years
4–6 years
7–10 years
|
48
|
72.7
|
16
|
24,2
|
2
|
3
|
Patients admission to treatment
Surgical treatment
Radiotherapy
Chemotherapy
Hormone therapy
|
22
|
33,3
|
13
|
19,7
|
15
|
22,7
|
66
|
100,0
|
Hormone Treatment period
6 month
1 year
2 year
3–5 years
|
6
|
9,1
|
25
|
37,9
|
30
|
45,5
|
5
|
7,6
|
Karnofsky Performance Scale Point
50
60
70
80
90
100
|
3
|
4,5
|
7
|
10,6
|
14
|
21,2
|
18
|
27,3
|
18
|
27,3
|
6
|
9,1
|
Urinary daily function problems
No
Yes
|
40
|
60,6
|
26
|
39,4
|
Use of protection for urinary incontinance
No
Yes
|
46
|
69,7
|
20
|
30,3
|
Regarding users
Less going out
Less liquid intake
Use of pads
Frequent toilet use
|
7
|
35,0
|
5
|
25,0
|
4
|
20,0
|
4
|
20,0
|
Need for information on urinary support use
No
Yes
|
49
|
74,2
|
17
|
25,8
|
If yes answer method
Friend
Doctor consultation
İnternet
|
2
|
3,0
|
9
|
13,6
|
3
|
4,5
|
Sexual dysfunctions before or after diagnosis
No
Yes
|
26
|
39,4
|
40
|
60,6
|
Need for information or support on subject of sexual incompetence
No
Yes
|
29
|
43,9
|
37
|
56,1
|
Gaita Incontinance
No
Yes
|
57
|
86,4
|
9
|
13,6
|
Feeling of lethargy in distension
No
Yes
|
18
|
27,3
|
48
|
72,7
|
Pain or enlargening in nipples
No
Yes
|
44
|
66,7
|
22
|
33,3
|
Swelling in ankles or wrist
No
Yes
|
23
|
34,8
|
43
|
65,2
|
*p < 0,05, **Mann Whitney U testi ve ***Kruskal Wallis test |
Of caregivers 81% were over 40 years old 79,7’% were female. nearly half (%42) had a university education or higher. 59,4% were married 43,8% were caregiving to their husbands 59,4% had no family history of cancer. Nearly half 42,2% had been caregiving for over 18 months. 67,2% it was found had no other help given to them from other people. Due to the caregiving %37,5 had been negatively affected in their work 56,37% in their personal and 57,8% in their social lives.
Support Needs Of Care Givers
In Table 2 the distribution and scores of caregivers and their points can be seen.
Table 2: Scores Used İn Study And Minimum Level Totals Distribution
Scores And Minimum Level
|
n
|
Min.-Max.
|
Average
|
Deviation
|
Level Of Health Service And İnformation
|
66
|
33+-63
7+-24
34+-13
12+-29
72+-115
|
44,8485
|
6,38084
|
Minimum Daily Life Standard
|
66
|
13,7424
|
3,57904
|
Sexuality Minimum Level
|
66
|
8,6970
|
2,74546
|
Psychological Minimum Level
|
66
|
20,4848
|
3,82800
|
Supportive Care Need Scale
|
66
|
87,7727
|
9,61376
|
Minimum Level Health Services Care Need
|
64
|
19+-42
28+-59
12+-30
15+-29
90+-142
|
28,2031
|
4,52569
|
Minimum Psychological And Emotional Support Care
|
64
|
38,9063
|
5,84378
|
Work and Social Needs Minimum
|
64
|
20,2500
|
3,56793
|
Minimum Information Needs
|
64
|
21,2031
|
3,58648
|
Cancer-Diagnosed Patients And Their Care Givers’ Minimum Support Care Needs
|
64
|
108,5625
|
11,91088
|
Regarding needs for information, the points of the patients with Enlargement of breast tissue and water retention in extremities, those with education level university or higherweres found to be higher than those who could just read and write (Table 3).
Table 3
Patients Details And Health Information Needs Points Comparison Debgö-KF 29Tr
|
|
n
|
Average
|
Standard Deviation
|
Listing Average
|
Test Statistics
|
Age
18–39
40–60
60 or above
|
6
|
48,5000
|
8,47939
|
|
1,718
|
,188
|
27
|
45,4815
|
6,44128
|
|
|
|
33
|
43,6667
|
5,78612
|
|
|
|
Education
Literate
Primary/Secondary School
High school
University or higher
|
9
|
39,7778
|
3,30824
|
|
2,964
|
,039*
|
23
|
44,9565
|
4,80036
|
|
|
|
20
|
45,1500
|
7,05822
|
|
|
|
14
|
47,5000
|
7,71362
|
|
|
|
Marital Status
Married
Single
|
24
|
45,5417
|
6,00709
|
|
,664
|
,509
|
42
|
44,4524
|
6,62295
|
|
|
|
Working Status
No
Yes
|
34
|
43,8824
|
7,20170
|
|
-1,274
|
,207
|
32
|
45,8750
|
5,29607
|
|
|
|
Career
Civil Servant
Working class
Freelance
Unemployed/Retired
|
11
|
43,1818
|
5,54650
|
|
2,056
|
,115
|
6
|
49,0000
|
8,83176
|
|
|
|
16
|
46,8125
|
5,65943
|
|
|
|
33
|
43,6970
|
6,19720
|
|
|
|
Income
2001–4000 TL
4001 TL or above
|
31
|
44,4194
|
6,89818
|
32,23
|
503,00**
|
,611
|
35
|
45,2286
|
5,96108
|
34,63
|
|
|
Years Of Cancer Diagnosis
1 year
2 years
3 years
4 years or more
|
18
|
44,9444
|
6,48503
|
|
,855
|
,469
|
16
|
44,2500
|
7,50555
|
|
|
|
14
|
47,0714
|
7,10865
|
|
|
|
18
|
43,5556
|
4,36863
|
|
|
|
Time of hormone therapy use
½ year
1 year
2 years
3 years or above
|
6
|
40,8333
|
2,13698
|
|
1,051
|
,377
|
25
|
45,9600
|
6,96707
|
|
|
|
30
|
44,7333
|
6,45907
|
|
|
|
5
|
44,8000
|
5,49545
|
|
|
|
Karnofsky Performance Scale Point
50
60
70
80
90
100
|
3
|
37,6667
|
3,05505
|
9,67
|
9,305***
|
,098
|
7
|
45,5714
|
3,59894
|
37,43
|
|
|
14
|
46,1429
|
3,97796
|
39,57
|
|
|
18
|
43,3333
|
7,60805
|
28,67
|
|
|
18
|
46,5000
|
6,54622
|
38,25
|
|
|
6
|
44,1667
|
8,44788
|
26,92
|
|
|
Limits in daily life due to urinary issues
No
Yes
|
40
|
45,7000
|
6,54844
|
36,14
|
414,50**
|
,165
|
26
|
43,5385
|
6,00154
|
29,44
|
|
|
Use of methods for incontinence
No
Yes
|
46
|
45,5870
|
6,28429
|
35,86
|
351,50**
|
,129
|
20
|
43,1500
|
6,43408
|
28,08
|
|
|
Need for information on incontinence protection
No
Yes
|
49
|
45,4286
|
6,25500
|
35,72
|
307,50**
|
,109
|
17
|
43,1765
|
6,63547
|
27,09
|
|
|
Sexual problems before or after diagnosis
No
Yes
|
26
|
44,9231
|
5,28336
|
35,10
|
478,50**
|
,585
|
40
|
44,8000
|
7,06817
|
32,46
|
|
|
Need for information and support on sexual performance
No
Yes
|
29
|
44,4138
|
5,46755
|
33,64
|
532,50**
|
,959
|
37
|
45,1892
|
7,07043
|
33,39
|
|
|
Presence of gaita incontinance
No
Yes
|
57
|
45,3158
|
6,52511
|
|
1,512
|
,135
|
9
|
41,8889
|
4,62181
|
|
|
|
Feeling of swelling in abdomen
No
Yes
|
18
|
44,3333
|
5,04101
|
|
-,399
|
,691
|
48
|
45,0417
|
6,85397
|
|
|
|
Pain or enlargement in nipples
No
Yes
|
44
|
43,5455
|
4,98115
|
29,78
|
320,50**
|
,026*
|
22
|
47,4545
|
8,03402
|
40,93
|
|
|
Edema in the ankles or wrists
No
Yes
|
23
|
42,1739
|
4,17408
|
|
-3,001
|
,004*
|
43
|
46,2791
|
6,91901
|
|
|
|
*p < 0,05, **Mann Whitney U testi ve ***Kruskal Wallis test |
It was found that ± 14,4 of patients needed urinary incontinence support and those who had gaita incontinence and needed support with the daily living were ± 16,5 (p < 0,05).
Of those who had a performance score of ‘’80” and ‘’90” on the Karnofsky scale were o ± 19,2 those who had a score of “50” were ± 4,3 these had a higher point score than average. (Benferroni, p=,010 ve p=,007). Those who had sexual problems before or after diagnosis ± 9,3 of patients had a greater need for susupportiveare statistically. (KWallis, p < 0,05).
Of working patients, ± 21,5 had water retention in extremes and ± 21,20 had higher psychological support care needs.. (KWallis, p < 0,05).
Support Care Needs Of Care Givers
The health support care needs of those with primary school education were higher than those of other education levels. Those whose income was higher than 4001TL had higher minimum health care service needs and minimum work or Social needs (Table 4).
Table 4
Comparison Of Minimum Health Support Care Service Needs Of Care Givers
|
|
n
|
Average
|
Standard Diversion pma
|
Listing average
|
Test Statistics
|
p
|
Age
18–39
40–60
60 or above
|
12
|
27,5000
|
5,07221
|
|
,306
|
,738
|
29
|
28,6552
|
5,17049
|
|
|
|
23
|
28,0000
|
3,34392
|
|
|
|
Gender
Famale
Male
|
51
|
28,2157
|
4,44663
|
32,61
|
326,00**
|
,926
|
13
|
28,1538
|
5,01408
|
32,08
|
|
|
Education
Primary School
Secondary School
Hing School
University or beyond
|
4
|
34,7500
|
7,54431
|
|
3,725
|
,016*
|
10
|
26,5000
|
3,80789
|
|
|
|
23
|
27,9130
|
4,08893
|
|
|
|
27
|
28,1111
|
4,01280
|
|
|
|
Marital Status
Single
Married
|
26
|
27,7308
|
4,43222
|
31,73
|
474,00**
|
,783
|
38
|
28,5263
|
4,61921
|
33,03
|
|
|
Having children
No
Yes
|
23
|
27,4348
|
4,46019
|
29,28
|
397,50**
|
,298
|
41
|
28,6341
|
4,55936
|
34,30
|
|
|
Number of children
1
2
3 or above
|
13
|
28,6154
|
3,27970
|
22,04
|
,272***
|
,873
|
15
|
28,4000
|
4,15417
|
21,27
|
|
|
13
|
28,9231
|
6,18414
|
19,65
|
|
|
Working status
No
Yes
Retired
|
22
|
28,5000
|
4,16047
|
34,11
|
,409***
|
,815
|
31
|
28,3226
|
5,17936
|
32,32
|
|
|
11
|
27,2727
|
3,31936
|
29,77
|
|
|
Income
2001–4000 TL
4001 TL or more
|
33
|
27,2727
|
4,53647
|
28,08
|
365,50**
|
,048*
|
31
|
29,1935
|
4,36974
|
37,21
|
|
|
Relative level
Spouse
Father
Brother
Other
|
28
|
28,1786
|
3,20940
|
34,16
|
10,879***
|
,012*
|
17
|
27,1176
|
3,96677
|
28,21
|
|
|
6
|
24,6667
|
1,96638
|
14,50
|
|
|
13
|
31,3077
|
6,58767
|
42,85
|
|
|
Time of diagnosis of your patient
1 year
2 years
3 years
4 years or more
|
19
|
28,6316
|
5,64910
|
|
,091
|
,965
|
17
|
28,1765
|
3,52199
|
|
|
|
11
|
27,8182
|
5,19265
|
|
|
|
17
|
28,0000
|
3,88909
|
|
|
|
Daily care giving time
Less than 6 hours
More than 6 hours
24 hours
|
28
|
27,6786
|
4,80010
|
|
1,211
|
,305
|
9
|
30,3333
|
6,20484
|
|
|
|
27
|
28,0370
|
3,45834
|
|
|
|
Total time care giving
3–6 months
7–10 months
11–14 months
15–18 months
18 months or above
|
6
|
26,1667
|
1,32916
|
24,75
|
2,286***
|
,683
|
14
|
28,4286
|
4,94142
|
34,21
|
|
|
14
|
27,6429
|
5,85212
|
28,82
|
|
|
3
|
28,6667
|
3,78594
|
36,67
|
|
|
27
|
28,7778
|
4,16333
|
34,78
|
|
|
History of cancer in family
No
Yes
|
38
|
27,9211
|
5,33414
|
29,78
|
390,50**
|
,155
|
26
|
28,6154
|
3,03416
|
36,48
|
|
|
Bakımından sorumlu olunan başka biri varlığı
Hayır
Evet
|
43
|
28,4651
|
4,73261
|
34,13
|
381,50**
|
,314
|
21
|
27,6667
|
4,12715
|
29,17
|
|
|
The situation of getting help from other people in caring for the patient
No
Yes
|
43
|
27,9767
|
4,15468
|
32,27
|
441,50**
|
,886
|
21
|
28,6667
|
5,28520
|
32,98
|
|
|
The effect of caregiving on the individual, work, family and social life
|
Work
No effect
Positive
Negative
|
32
|
28,3438
|
4,37448
|
34,09
|
2,774***
|
,250
|
8
|
29,7500
|
4,43203
|
39,50
|
|
|
24
|
27,5000
|
4,79130
|
28,04
|
|
|
Family
Unaffected
Positive
Negative
|
18
|
26,5000
|
3,91453
|
27,31
|
6,709***
|
,035*
|
10
|
31,4000
|
4,76562
|
45,80
|
|
|
36
|
28,1667
|
4,37852
|
31,40
|
|
|
Personally
Unaffected
Positive
Negative
|
6
|
26,0000
|
5,93296
|
22,83
|
4,112***
|
,128
|
9
|
30,0000
|
3,77492
|
42,11
|
|
|
49
|
28,1429
|
4,43001
|
31,92
|
|
|
Social Life
Unaffected
Negative
|
27
|
26,9259
|
4,03757
|
26,80
|
345,50**
|
,035*
|
37
|
29,1351
|
4,68545
|
36,66
|
|
|
*p < 0,05, **Mann Whitney U test and Kruskal Wallis test |
Those caregivers who were looking after a brother and whose social life was negatively affected were found to need more social services support (Table 4). Compared to those whose family life was positively or not affected at all ± 40,8, they were seen to need more psychological-emotional, and informational support (Ben Ferroni, p=,000). Those who were caregiving for more than 6 hours a day ± 116,6 needed more support than those who gave less (Ben Ferroni, p=,032).
Discussion Of Features Of The Patients And Caregivers' Social Demographics
In the study of support needs for patients undergoing hormone therapy for prostate cancer and their caregivers, 50% of the patients were defined as being 60 years old or over. In literature 1 out of every 350 prostate cancer patients is diagnosed at the age of under 50 but between 50 and 59 that figure was one in 53. The incidence of protest rate cancer over 65 years is 60% (19). Whilst %51.5 of the patients were not working during the study, %45.5 were retired. The fact that fewer of the patients were not working rather than employed at the time of the study was defined as being due to their ages.
Discussion Of Patients' Support Care Needs
The total points of those patients with a university education or higher were seen to be higher than those who were just literate (Table 4). Looking at the literature we can see that those who have a higher standard of education have higher life standard habits and are more likely to feel the need for higher support care [20–22]. The study findings support this literature.
Those who have had enlarged breast tissue and water retention in extremities are more likely to need more supportive care. In the Steen and etc. (2016) study, those patients who had changes in breast tissue or other problems such as hot flushes or prostrate atrophy were found to be negatively affected in their social and psychological lives [23]. In the Gentili and etc. (2019) study the physical side effects like a reduction in fundamental strength and performance led to a reduction in psychological self-confidence and body image [56]. If we look at the literature one can see that if psychological problems with body image can be ascertained to be a result of physical effects then the effects on life quality may be positive. It is seen that it is important to assess the support care needs by first assessing the aims of each patient [24–27].
In the study, the reasons for incontinence were seen to be their reduced intake of liquids and their lessened activity outside. In literature patients who had incontinence had had a reduction in daily activities, were more isolated socially drank fewer liquids, and in time had constipation, electronic imbalance, and other physical complaints [28–30]. It is important to note here that the presence of incontinence is down to not only physiological reasons but also psychological ones. It is necessary to explain clearly to the patients this and how to do pelvic exercises, to give information on correct care materials and medical methods on this issue, and to plan the necessary psychological therapy.
In the Zhang and etc. (2017) study it was seen that an early diagnosis of urinary incontinence or minor incontinence together with an education in pelvic exercises had a positive effect on the patients [31].
In the study, those patients with a score of ‘’80” and ‘’90” on the Karnofsky Scale had higher points than the others on the minimum need for sexual support care needs. The observation that those patients who had a generally high level of well-being had more need of sexual support care than those patients with a leer well-being was put down to the fact that they had fewer psychological or physical symptoms than the others [32]. The organization and development of care plan strategies are helped by the patient's involvement in them [24–27].
39,4% of patients had sexual problems before they were diagnosed but after it was seen to be 61.1%. In the study, 56,1% had sexual dysfunction and needed information on this issue (Table 1). Literature has recorded that those patients who receive hormone therapy for prostate cancer have erectile dysfunction loss in libido, enlargement of breast tissue reduction of testosterone, and other similar symptoms [33–40].
The Barbera and etc. (2017) study gave similar results to this study in that all the patients were undergoing hormone therapy (n = 66) and 60% of them had sexual problems [41,42]. This scale proves the need for supportive care for sexual problems [42–46]. The fact that the patients were undergoing therapy may be a reason for the sexual dysfunction. The literature says that patients do not receive a proper investigation of sexual dysfunction by health professionals [47]. The discussion gives importance to the need for the oncology and urology nurses to see the patient as a whole about support care including their psychosexual needs [48,49].
According to the literature during cancer therapy, the reasons for sexual problems like erectile dysfunction discord between the couple lack of satisfaction in the marriage, and low self-esteem are very important in consideration of this issue. When doing this diagnosis of psychosexuality appropriate measures and methods must be used regarding erectile dysfunction discord in the couple unsatisfying marriage and low self-esteem including involvement of the spouse where necessary. During this period, it is advised that the nurses must diagnose and find suitable solutions to treat the patients' psychosexual problems. This treatment may include physical medical and psychological methods to encourage intimacy with the partner that encourage other methods of sexual satisfaction without necessarily including complete physical sex [48,49]. On this subject, nurses may give information to patients and caregivers.
According to the study, those patients who were working had a higher need for psychological care than the others (p < 0,05). The reason for this was purported to be their fear that their condition should affect others in the workplace and their lowering of self-esteem [50].
Discussion Of Care Givers Support Care Needs
According to the study, those patients with a university or higher education had more of a need for supportive care. The Orak and Sezgin’s study (2015) proved the relationship between education level and care responsibility. Those who had only literacy levels were seen to have higher points in care caregiving responsibility than those with other levels of education [51]. The Alfano ve etc. (2019) study showed that because of the lower level of education they had a higher need of learning to know about caregiving methods from the health service [52].
The study findings conclude that those of lower economic classes need the highest level of health service support. Caregiving, the structure of the given services, circumstances, conditions, and economic problems may negatively affect both patients and caregivers [53].
Those whose social life was affected had a higher level of supportive care needs than those who weren't negatively affected. The Molassiotis and Wang’s (2022) study showed that those caregivers who were socially isolated needed health services like education in caregiving giving skills, psychological education, and therapeutic consultancy [54].
The caregivers whose family lives were negatively affected were shown to have a higher need for psychological and emotional support. According to the literature, caregivers need family and friends' support. Where this is not met they have a higher need for psychological and emotional support [55–57]. The caregiver should be interviewed and their needs evaluated. Where one's family life has been affected negatively, they must receive group support and planning of treatment of their loss of roles [56–58].
Those who worked for a wage of 4001 TL or higher had a higher need for work and social needs. The Halpern and etc. (2017) study showed that when the caregiver had someone to talk to and help with daily activities and cars giving their relationship with the patient may be positively affected. Those caregivers who had family or friend support were less likely to feel the psychological burden of caregiving. On this point, there seems to be a high correlation between economic class and social needs [59].
The study shows that caregiving may result in changes positive and negative in their family lives. It was seen that more information was needed due to these changes. The responsibility of caregiving and the problems that may bring in their family and social lives means that the caregiver requires information on caregiving methods [60,61].
In the Chua and etc. (2020) study the caregivers most often needed information on diagnosis, treatment, and side effects and also on solutions to family and social problems. Because the preferred method of finding information was the Internet, this proved that the health service was not providing it effectively. The health service must provide good information services because it may have negative effects from the Internet. When the caregivers are given the necessary education their needs for health services in support care are thought to reduce. From the moment of diagnosis on, appropriate education must be planned for caregivers [60].
In conclusion, the patients were found to have a high need for supportive care for physical symptoms such as water retention and incontinence, and the caregivers were found to have a high need for support regarding their social and family lives.
Concerning the study findings, it is recommended that there is formed a more complete support care service that includes a psychosexual diagnosis to appreciate that the patient's symptoms are not just physical but psychological also. The assessment of patients should be done with appropriate measures, the interviews should include the spouse and the patient should be involved in the diagnosis and planning and development of their support care strategies. For caregivers, inappropriate measures, an inventory of family needs, and progressed cancer patient caregivers' needs should be created defining their social life needs, needs due to loss of a role in the family, anxiety, and psychological problems. It is recommended that nurses are educated in services in these regards.
The study was done during the COVID-19 pandemic, thus the number of patients applying for the study was reduced.