Caregiver Burden in Informal Caregivers of Patients in Saudi Arabia Receiving Hemodialysis: A Mixed-Methods Study
Abstract
:1. Introduction
2. Materials and Methods
2.1. Aim and Objectives
2.2. Design
2.3. Sample/Participants
2.4. Data Collection
2.4.1. Phase 1: Cross-Sectional Study
2.4.2. Phase 2: Semi-Structured Interviews
2.5. Ethical Considerations
2.6. Data Analysis
2.7. Rigor
3. Results
3.1. Phase 1: Quantitative Phase
3.1.1. Caregiver Characteristics: Descriptive Statistical Analysis
3.1.2. Caregiver Burden
3.1.3. Association between Caregiver Characteristics and Caregiver Burden
3.2. Phase 2: Qualitative Phase
3.2.1. Caregiver Characteristics for Semi-Structured Interview
3.2.2. Caregiver Experiences: Thematic Analysis of Qualitative Data
- Positive caregiving experiences
- Factors influencing CB
- Negative caregiving experiences
Positive Caregiving Experiences
“Because she is my mother. I owe my parents all my life, and whatever I do for them until my death will not return their favor and efforts”.(C7, 35Y, divorced, daughter)
“I have changed for the better. My belief that taking care of my mother is the right thing I should do has been strengthened. Just seeing my mother smiling and satisfied with me makes me feel that I own the whole world”.(C7, 35Y, divorced, daughter)
“I do not consider this a burden whatever happens. She is my children’s grandmother. She loves me and my children. When she was in good health condition, she did us everything and took care of us. Now I take care of her with all love and respect, and I am sure God will reward me for this good deed”.(C10, 43Y, married, daughter-in-law)
“My husband has retired and I can see him more than before. We became able to spend a lot of time with each other. We live far away from the dialysis center, so I accompany him for a long distance and spend much time with him during treatment sessions. Every cloud has a silver lining. May God help him recover soon”.(C6, 40Y, first wife)
“Usually, [before her father became ill] I spent my time doing useless things, like sleeping during the afternoon, watching television or playing on my phone, instead of taking care of my father…. In fact, providing care to my father has strengthened my diligence and motivation to be better”.(C11, 25Y, single, daughter)
Factors Influencing Caregiver Burden
“I have a lot of time for myself. I sometimes wish to spend more time with him. We (three wives) share in taking care of him”.(C6, 40Y, first wife)
“I take care of her but when she needs to be subjected to some medical checks in another city my brother travels with her as I am tied to my university studies”.(C12, 20Y, single, sister)
“My employer and colleagues support me. My work schedule is arranged in such a good way where I do not teach the last classes and do not take any school activities at the time when my mother has dialysis sessions, So I am able to leave early and accompany her”.(C9, 32Y, single, daughter)
“I do not feel that he is a burden on me nor feel angry with him because love makes one forgive others for a lot of things. My husband makes me feel that life is normal and conveys this impression to me, as a result, this is reflected in my own life. I sometimes forget that we have a patient at home”.(C6, 40Y, first wife)
“I think that taking care of a patient who is active and seemingly healthy with low demand, as in the case of my husband, who gives the impression that he is healthy and not diseased, doesn’t require efforts from me”.(C5, 65Y, wife)
“My patient’s wives and daughters, were able to know his condition once they see his face. After his daughters married, I began to be involved in taking care of him. I am able to know if he is good or not once I see his face”.(C10, 43Y, married, daughter-in-law)
Religious Beliefs
“First this is my mother, and I do not do anything worthy of praise. This is my duty and sometimes I feel a bit negligent in this regard. I take care of my mother because our true religion commands us to do so, and because “paradise is under the feet of mothers”. Taking care of my mother brings me luck and success in every step I take. Her satisfaction is an important and essential thing in my life. She needs my help a lot now and I should be beside her”.(C9, 32Y, single, daughter)
“I got divorced from my former husband because I wanted to stay beside (my mother) and take care of her. So it’s unlikely that I will think about marrying again as long as she is in such a difficult condition, all the tiredness I feel vanishes at a smile from my mother or some prayer for me from the depth of her heart wishing me something beautiful to happen. Now I feel inner peace and reassurance I have never felt before”.(C7, 35Y, divorced, daughter)
“I rejected the marriage proposals of a lot of men only to take care of my mother. I asked my brother and sisters who are younger than me to marry and not to wait for me because I don’t want to stand in their way to marry. I have the conviction that my mother is the more important than all, than everything, even myself. She is the cause of my existence and I have to stand by her now. I believe that God hides and saves the most beautiful things for me”.(C9, 32Y, single, daughter)
Culture
“My social life has not changed much. We are from a conservative family that does not allow girls to go out with their friends so much”.(C12, 20Y, single, sister)
“Typically, I’m not a social person. I meet my friends at work in the morning and just that”.(C9, 32Y, single, daughter)
“The most difficult thing in her illness is that she has a disease that necessitates her to go to the hospital periodically, and that means it cannot be treated at home like other diseases such as diabetes and blood pressure”.(C12, 20Y, single, sister)
“Our lives have become different from the past. We used to travel and go out a lot. I love to travel to Mecca to perform minor pilgrimages from time to time, but after my husband fell ill with this terrible disease and we got tied to treatment plans, I could never go”.(C5, 65Y, wife)
“I am afraid that my husband’s condition has worsened. He is my husband and the breadwinner of the family, he holds the family firmly without him I am paralyzed”.(C5, 65Y, wife)
“Sometimes she does not stick to her specific meals or refuses to take some medicines, which makes me feel a bit worried about her and her health condition, in general I rarely get angry and do not even like to consider the idea of being angry in connection with my mother. I do not get angry with my mother, but I am just worried about her and fear living without her”.(C7, 35Y, divorced, daughter)
4. Integration and Synthesis
5. Discussion
6. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Variable | Categories | Caregivers (n = 61) |
---|---|---|
Mean age in years (SD) | 36.4 (12.9) | |
Gender, n (%) | Male Female | 13 (21.3) 48 (78.7) |
Educational level, n (%) | Illiterate Primary studies Secondary studies Higher education Other | - 11 (18.0) 16 (26.2) 34 (55.7) - |
Marital status, n (%) | Married Single Widowed Divorced Other | 37 (60.7) 18 (29.5) 2 (3.3) 4 (6.6) - |
Employment, n (%) | Full-time job Part-time job | 23 (37.7) - |
Retired | 3 (4.9) | |
Student (FT & PT) | 7 (11.5) | |
Unemployed | 7 (11.5) | |
Housewife | 21 (34.4) | |
Self-employed | - | |
Monthly household income (SAR), n (%) (1 GBP = 5 SAR) | 0–5000 5000–10,000 10,000–15,000 15,000–20,000 20,000–25,000 25,000–30,000 >30,000 missing | 9 (14.8) 16 (26.2) 26 (42.6) 8 (13.1) - - - 2 (3.3) |
Median dialysis duration in months (IQR) | 20 (8–54) | |
Comorbidities n (%) | 0 1–2 3–7 | 46 (75.4) 13 (21.3) 2 (3.3) |
Patient Travel time to hospital, minutes. median (IQR) | 15 (10–20) | |
Caregiver relationship to patient n (%) | Spouse Sibling Parent Friend Son/daughter Grandchildren Other | 20 (32.8) 4 (6.6) 9 (14.8) - 23 (37.7) 2 (3.3) 3 (4.9) |
Patients and caregiver live together n (%) | Yes No | 55 (90.2) 6 (9.8) |
Question | Never n (%) | Rarely n (%) | Sometimes n (%) | Often Frequently n (%) | Nearly Always n (%) |
---|---|---|---|---|---|
Do you feel that your relative asks for more help than he or she needs? | 26 (42.6) | 15 (24.6) | 10 (16.4) | 7 (11.5) | 3 (4.9) |
Do you feel that because of the time you spend with your relative you don’t have enough time for yourself? | 24 (38.7) | 13 (21.0) | 14 (22.6) | 3 (4.8) | 7 (11.3) |
Do you feel stressed between caring for your relative and trying to meet other responsibilities for your family or work? | 19 (30.6) | 10 (16.1) | 15 (24.2) | 10 (16.1) | 7 (11.3) |
Do you feel embarrassed about your relative’s behavior? | 44 (71) | 12 (19.4) | 4 (6.5) | 1 (1.6) | 0 (0) |
Do you feel angry when you are around your relative? | 48 (77.4) | 9 (14.5) | 4 (6.5) | 0 (0) | 0 (0) |
Do you feel that your relative currently affects your relationships with others in a negative way? | 33 (53.2) | 9 (14.5) | 14 (22.6) | 3 (4.8) | 2 (3.2) |
Are you afraid of what the future holds for your relative? | 5 (8.1) | 3 (4.8) | 19 (30.6) | 10 (16.1) | 24 (38.7) |
Do you feel your relative is dependent upon you? | 47 (75.8) | 10 (16.1) | 3 (4.8) | 1 (1.6) | 0 (0) |
Do you feel strained when you are around your relative? | 41 (66.1) | 12 (19.4) | 5 (8.1) | 2 (3.2) | 1 (1.6) |
Do you feel your health has suffered because of your involvement with your relative? | 41 (67.2) | 8 (13.1) | 4 (6.6) | 7 (11.5) | 1 (1.6) |
Do you feel that you don’t have as much privacy as you would like because of your relative? | 42 (67.7) | 12 (19.4) | 5 (8.1) | 2 (3.2) | 0 (0) |
Do you feel that your social life has suffered because you are caring for your relative? | 26 (41.9) | 14 (22.6) | 11 (17.7) | 2 (3.2) | 8 (12.9) |
Do you feel uncomfortable about having friends over, because of your relative? | 38 (61.3) | 15 (24.2) | 6 (9.7) | 0 (0) | 2 (3.2) |
Do you feel that your relative seems to expect you to take care of him/her, as if you were the only one he/she could depend on? | 26 (42.6) | 9 (14.8) | 15 (24.6) | 5 (8.2) | 6 (9.8) |
Do you feel that you don’t have enough money to care for your relative in addition to the rest of your expenses? | 39 (62.9) | 9 (14.5) | 6 (9.7) | 0 (0) | 7 (11.3) |
Do you feel that you will be unable to take care of your relative for much longer? | 47 (75.8) | 9 (14.5) | 1 (1.6) | 2 (3.2) | 2 (3.2) |
Do you feel you have lost control of your life since your relative’s illness? | 41 (66.1) | 8 (12.9) | 8 (12.9) | 1 (1.6) | 3 (4.8) |
Do you wish you could just leave the care of your relative to someone else? | 45 (72.6) | 8 (12.9) | 6 (9.7) | 2 (3.2) | 0 (0) |
Do you feel uncertain about what to do about your relative? | 24 (38.7) | 13 (21) | 14 (22.6) | 6 (9.7) | 4 (6.5) |
Do you feel you should be doing more for your relative? | 12 (19.4) | 9 (14.5) | 19 (30.6) | 9 (14.5) | 12 (19.4) |
Do you feel you could do a better job in caring for your relative? | 8 (12.9) | 11 (17.7) | 21 (33.9) | 10 (16.1) | 11 (17.7) |
Question | Not at all | A little | Moderately | Quite a bit | Extremely |
Overall, how burdened do you feel in caring for your relative? | 20 (32.3) | 17 (27.4) | 11 (17.7) | 9 (14.5) | 4 (6.5) |
Predictors | Caregivers Burden | ||
---|---|---|---|
Mean SD of Caregiver Burden Level | B | p Value | |
Age | 0.553 | 0.000 | |
Gender Male Female | 13 ±7 21 ± 48 | Ref 0.266 | 0.039 |
Education Primary Secondary Higher education | 18 ± 15 15 ± 8 22 ± 13 | Ref −0.105 0.127 | 0.545 0.465 |
Marital status Married Single Divorced Widow | 21 ± 13 13 ± 10 19± 10 38 ± 4 | Ref 0.298 −061 0.257 | 0.019 0.619 0.039 |
Employment Full time job Retired Student Housewife Unemployed | 18 ± 10 24 ± 21 14 ± 10 25 ± 14 9 ± 10 | Ref 0.072 −0.111 0.225 −0.240 | 0.571 0.403 0.107 0.074 |
Household income in SAR 0–5000 5000–10,000 10,000–15,000 15,000–20,000 | 21 ± 17 16 ± 14 20 ± 12 19 ± 10 | Ref −0.194 −0.038 −0.074 | 0.275 0.833 0.644 |
Comorbidity No comorbidity One or two comorbidities Three or more Cohabiting status Yes No | 17 ± 12 24 ± 13 38 ± 4 20 ± 13 15 ± 10 | Ref 0.227 0.304 Ref −097 | 0.069 0.016 0.458 |
Travel duration from home to dialysis/min | 15 min, range (10–20) | 0.027 | 0.836 |
Relationship to patient Son and daughter Parent Spouse Sibling Grandchildren Other relationship | 12 ± 8 24 ± 13 25 ± 15 22 ± 9 16 ± 9 20 ± 2 | Ref 0.355 0.514 0.220 0.057 0.158 | 0.007 0.000 0.078 0.639 0.197 |
Carer ID | Pt ID | Age | Sex | Marital Status | Education Level | Occupation | Caregiver Relationship to Patients | Level of CB | Scores of CKD-SBI |
---|---|---|---|---|---|---|---|---|---|
C3 | P3 | 21 | F | Single | Secondary | Student | Daughter | Mild | Highest |
C4 | P4 | 45 | F | Married | Primary | Housewife | Mother | Moderate | Highest |
C5 | P5 | 65 | F | Married | Primary | Housewife | Wife | Moderate | Highest |
C6 | P6 | 40 | F | Married | Higher education | Housewife | First wife | Mild | Middle |
C7 | P7 | 35 | F | Divorced | Secondary | Unemployed | Daughter | Mild | Middle |
C9 | P9 | 32 | F | Single | Higher education | Full time teacher | Daughter | No burden | Middle |
C10 | P10 | 43 | F | Married | Secondary | Housewife | Daughter in-low | Mild | Lowest |
C11 | P11 | 25 | F | Single | Higher education | Unemployed | Daughter | Mild | Lowest |
C12 | P12 | 20 | F | Single | Higher education | Student | Sister | Mild | Lowest |
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Alshammari, B.; Noble, H.; McAneney, H.; Alshammari, F.; O’Halloran, P. Caregiver Burden in Informal Caregivers of Patients in Saudi Arabia Receiving Hemodialysis: A Mixed-Methods Study. Healthcare 2023, 11, 366. https://doi.org/10.3390/healthcare11030366
Alshammari B, Noble H, McAneney H, Alshammari F, O’Halloran P. Caregiver Burden in Informal Caregivers of Patients in Saudi Arabia Receiving Hemodialysis: A Mixed-Methods Study. Healthcare. 2023; 11(3):366. https://doi.org/10.3390/healthcare11030366
Chicago/Turabian StyleAlshammari, Bushra, Helen Noble, Helen McAneney, Farhan Alshammari, and Peter O’Halloran. 2023. "Caregiver Burden in Informal Caregivers of Patients in Saudi Arabia Receiving Hemodialysis: A Mixed-Methods Study" Healthcare 11, no. 3: 366. https://doi.org/10.3390/healthcare11030366