|Year : 2023 | Volume
| Issue : 3 | Page : 309-315
Predictors of burden perceived by informal caregivers of patients registered in the home health-care unit
Ebtisam M F. Alhawsawi1, Ghufran A Hariri1, Sulhi A Alfakeh2, Maram T Alkhatieb3
1 Department of Family Medicine, King Abdulaziz University Hospital, Jeddah, Saudi Arabia
2 Department of Psychiatry, King Abdulaziz University Hospital, Jeddah, Saudi Arabia
3 Department of Surgery, King Abdulaziz University Hospital, Jeddah, Saudi Arabia
|Date of Submission||04-Apr-2022|
|Date of Decision||07-Feb-2023|
|Date of Acceptance||20-Feb-2023|
|Date of Web Publication||4-Jul-2023|
Ebtisam M F. Alhawsawi
King Abdulaziz University Hospital, Jeddah
Source of Support: None, Conflict of Interest: None
| Abstract|| |
Context: Studies have reported multiple variables that can affect the level of burden on informal caregivers. The need for informal caregivers is expected to increase in the upcoming years. Informal caregivers are an important extension of the formal health-care system. Aims: The aim of this study was to discover the characteristics of informal caregivers of adult patients, to determine the socioeconomic, psychological, and physical consequences facing informal caregivers, and to measure caregivers' burdens and needs. Settings and Design: An analytical cross-sectional study that was carried out in Saudi Arabia, in the home health-care unit of King Abdelaziz University Hospital in the city of Jeddah. Subjects and Methods: A validated self-administered questionnaire in Arabic and English was used. The required sample size was 122 participants. Ethical approval was obtained. Statistical Analysis Used: Descriptive statistics consisted of means, standard deviations, frequency tables, cross-tabulation, and charts. Categorical variables were compared using the Chi-square test to determine significant relationships between variables. Results: A total of 124 participants responded to a request to participate in the study. The majority of the caregivers (92) were family members. There was a significant relationship between the nature of the connection between the caregiver and the recipient in association with the burden scale (P = 0.001). No significant relationship was found between caregivers' gender, marital status, or income level and the burden score. Conclusions: Most of the caregivers reported no burden to minimal burden. The relationship with the care recipient has a negative impact on the burden scale.
Contexte: Des études ont fait état de plusieurs variables qui peuvent influer sur le niveau de charge des aidants naturels. Le besoin d'aidants naturels devrait augmenter dans les années à venir. Les aidants naturels constituent un prolongement important du système formel de soins de santé. Objectifs: Le Le but de cette étude était de découvrir les caractéristiques des aidants proches de patients adultes, de déterminer les effets socio-économiques, psychologiques, et les conséquences physiques auxquelles sont confrontés les aidants naturels, et pour mesurer les fardeaux et les besoins des aidants. Paramètres et conception : une analyse étude transversale qui a été menée en Arabie Saoudite, dans l'unité de soins à domicile de l'Hôpital Universitaire Roi Abdelaziz de la ville de Djeddah. Sujets et méthodes: Un questionnaire auto-administré validé en arabe et en anglais a été utilisé. La taille d'échantillon requise était 122 participants. L'approbation éthique a été obtenue. Analyse statistique utilisée: Les statistiques descriptives se composaient de moyennes, d'écarts types, tableaux de fréquences, tableaux croisés et graphiques. Les variables catégorielles ont été comparées à l'aide du test du chi carré pour déterminer les relations significatives entre variables. Résultats: Au total, 124 participants ont répondu à une demande de participation à l'étude. La majorité des soignants (92) étaient des membres de la famille. Il y avait une relation significative entre la nature du lien entre le soignant et le bénéficiaire dans association avec l'échelle de charge (P = 0,001). Aucune relation significative n'a été trouvée entre le sexe, l'état matrimonial ou le niveau de revenu des aidants. et le score de charge. Conclusions: La plupart des soignants ont signalé un fardeau nul à un fardeau minimal. La relation avec le bénéficiaire des soins a un impact négatif sur l'échelle de la charge.
Mots-clés: Fardeau de l'aidant, personnes âgées et bénéficiaires de soins, soins à domicile, aidants proches
Keywords: Caregiver's burden, elderly and care recipients, home health care, informal caregivers
|How to cite this article:|
Alhawsawi EM, Hariri GA, Alfakeh SA, Alkhatieb MT. Predictors of burden perceived by informal caregivers of patients registered in the home health-care unit. Ann Afr Med 2023;22:309-15
|How to cite this URL:|
Alhawsawi EM, Hariri GA, Alfakeh SA, Alkhatieb MT. Predictors of burden perceived by informal caregivers of patients registered in the home health-care unit. Ann Afr Med [serial online] 2023 [cited 2023 Sep 26];22:309-15. Available from: https://www.annalsafrmed.org/text.asp?2023/22/3/309/380161
| Introduction|| |
The world's population is aging. The population in Saudi Arabia is also increasing, as the elderly population is also growing and is expected to increase to 2 million by 2050. This results in an increase in health-care demands and expenses, which will lead to a switch from formal care to informal care. Taking care of a member with chronic illness places the caregiver under a psychological and physical burden. The informal caregivers experienced many changes in psychological, social, physical, occupational, and economic aspects of life.,,, The psychological burden can increase over time, which can decrease care recipient satisfaction and needs.
| Subjects and Methods|| |
The study is an analytical cross-sectional study that was carried out in Saudi Arabia, in the home health care unit at King Abdulaziz University Hospital in the city of Jeddah, over 2 months from January 2021 to February 2021.
All informal caregivers of adult patients (>18 years old) who were willing to participate were included in the study. Informal caregivers of pediatric patients were excluded from the study.
The number of patients in the home health care unit from January to February 2021 was approximately 178. The required sample size was calculated using the Raosoft sample size calculator at a confidence level of 95%, an error of 5%, and a prevalence of the problem of 50%. The required sample size was 122 participants.
A validated self-administered questionnaire in Arabic and English was used from another study after receiving the permission of the principal investigator.
The questionnaire consisted of three main parts:
- The first part consisted of care recipient-related information
- Demographic data (gender and age) of care recipients and their health conditions; in this part, the caregiver can choose more than one of the following conditions (temporary disease, disability of severe complaints with the prospect of complete recovery, chronic disease, permanent disability, dementia or memory problems, mental or psychiatric problems, problems due to aging or terminal disease)
- Relationship of the caregiver to care recipients
- The second part consisted of caregiver-related information:
- Demographic data (gender, age, education level, current housing, marital status, number of children, occupation, and income level) and length of time the caregiver has been providing care for the patient
- General medical condition of the caregiver (excellent, good, or poor).
- Two tables:
- [Table 1] contains 11 questions and a scale (Yes, No questions) assessing the social, economic, psychological, and physical consequences of elderly care
- [Table 2] with the Caregiver Burden Scale using the Zarit Burden Interview. which consists of 22 questions; for each question, the caregiver has to circle how often they feel a particular way with a specific score for each answer category (never = 0, rarely = 1, sometimes = 2, frequently = 3, and nearly always = 4). After answering all questions and summing the score, the amount of burden can be determined:
- 0–20 no or minimal burden
- 21–40 mild/moderate burden
- 41–60 moderate/severe burden
- 61–88 severe burden.
- The third part consists of the needs of the informal caregivers and care recipients and contains three tables:
- [Table 1] asks about the need for health-care devices that are basic for home health care (glucometer, blood pressure measuring device, wound management kit, thermometer, oximeter, movable chair, feeding equipment, movable bed, and tracheostomy care kit), and the caregiver is asked to answer either (Yes, I need it; No, I have enough; or I don't need it)
- [Table 2] asks the caregivers about educational or training courses they would like to take (cleaning catheters, giving injections, dealing with wounds, steps to be done in emergency situations, and physiotherapy), and the caregiver is asked to answer with either (Yes, No or I have learned that)
- Caregivers about their preferences for communicating with the health-care system and the visiting schedule (the caregiver can choose more than one method) (by phone call, text message, E-mails, social network, or going personally to their house)
- The caregivers about the motivational methods that encourage them to optimize their care, including social media, financial reward, psychological support, the establishment of a program for caregiver rehabilitation, or others. The caregivers are asked to answer with either Yes or No and can choose more than one motivational method
- Other questions were about whether a caregiver needs financial support for home care, frequent home health-care visits for their recipients, health-care staff, or other family members who can take care of care recipients on behalf of the regular informal caregiver.
The researchers interviewed the informal caregivers during the home health-care visits, and all eligible available caregivers recruited during the study had the chance to participate. The information sheet and informed consent form were written in Arabic and English. Consent from voluntary participants was obtained.
The questionnaire was provided in two languages, Arabic and English, according to the caregiver's spoken language, and it took approximately 15 min to complete.
Data entry and statistical analysis were performed using IBM SPSS statistics version 20.0” (IBM SPSS statistics ver. 20.0) to evaluate and test the hypothesis. Descriptive statistics included means, standard deviation, frequency tables, cross-tabulation, and charts. The categorical variables were compared using the Chi-square test to find significant relationships. A probability (P) <0.05 was considered statistically significant.
| Results|| |
After data collection, a total of 124 participants (caregivers) responded to participate in the study.
The care recipients were 50 male (40.3%) and 74 female (59.7%). The largest age category was 68 years old and above, which was 72 (58.1%). Eighty-six caregivers (69.4%) perceived the recipient to be in good health.
Chronic disease and disability accounted for the majority of the recipients' health problems (71.8% and 16.1%, respectively), as shown in [Table 1].
There were 91 (73.4%) care recipients with one health problem and 33 (26.6%) recipients with 2 or more.
The majority of the caregivers were family members close to the recipients (92, 74.2%), whereas the number of paid caregivers was 32 (25.8%).
The majority of the recipients (55, 44.4%) were cared for by caregivers for 1–3 years.
The caregivers were 23 males (18.5%) and 101 females (81.5%).
The largest age category was 18–37 years old, which had 49 participants (39.5%).
The majority of the caregivers (65, 52.4%) were living in a house of more than 5 members.
Approximately half of the caregivers (66, 53.2%) were unemployed, and 56 (45.2%) had a monthly financial income level of <3000 Saudi Riyal.
The majority of the caregivers (71, 57.3%) rated their health as good, as shown in [Table 2].
Most of the caregivers (74, 59.7%) complained of depression or mood swings. Half of them (62, 50%) complained of muscle, bone, or joint pain, followed by complaints of neurological problems, including headache, attention deficit, and worsening sight (61, 49.2%), as shown in [Figure 1]. When we assessed the Caregiver Burden Scale using the Zarit Burden Interview, the majority (51, 41%) had no or minimal burden, as shown in [Figure 2].
|Figure 1: Social, economic, psychological, and physical burden on caregivers|
Click here to view
We assessed the relation between the characteristics of caregivers and the Zarit burden scale. We found a significant relationship between the nature of the relationship between the caregiver and recipient and the burden score (P = 0.001). In addition, there was a significant relationship between the age of the care recipient and the caregiver burden score (P = 0.047). The relationship between the age of the caregiver and the burden score was also significant (P = 0.001). The length of time care was provided by the caregiver also had a significant relationship with the burden score (P = 0.008). The relationship between the paid caregiver and the burden score was found to be significant in our study (P = 0.005).
No significant relationship was found between caregivers' gender, marital status, or income level and burden score (P = 0.656, P = 0.162, P = 0.854, respectively).
The most needed instruments that were ordered by the caregivers were the wound care kit, thermometer, and blood pressure measuring device (28.2%, 27%, and 25%, respectively), as shown in [Figure 3].
The training course most requested by the caregivers was on how to deal with emergency situations that they might commonly face (62.9%), as shown in [Figure 4].
The majority of the caregivers (84%) preferred contacting the home health-care unit by telephone for any concerns and for scheduling visits, as shown in [Figure 5].
Almost 15% of the caregivers reported that there is no relative or friend who can take care of the recipients for them when they are ill and during leave, which had a significant relationship with the burden scale (P = 0.028). The percentage of caregivers who needed home health-care staff to take care of the recipients for them on a temporary basis was 48.3%, which was significantly related to the burden scale (P = 0.007).
Almost (37%) of the caregivers needed financial support, with a significant relationship with the burden of care (P < 0.0005).
Regarding the motivational methods that encourage caregivers, the highest was psychological support, reported by 81 (65.3%) of the participants, as shown in [Figure 6].
| Discussion|| |
As informal caregivers are an important extension of the health-care system, focusing on the psychological and physical burdens they experience was one of the researchers' priorities in conducting this study. The researchers were concerned about caregivers' and care recipients' satisfaction. Therefore, this study aimed to discover the characteristics of the informal caregivers of adult patients and to determine the socioeconomic, psychological, and physical challenges that informal caregivers face. Studies have reported multiple variables that can affect the level of burden among informal caregivers, such as disease characteristics and demographic data of the care recipient (race, age, and income). Another factor that may affect the burden of caring is the relation between the care recipients and caregivers. Disease status in care recipients, such as Parkinson's disease, dementia, and Alzheimer's disease, was also associated with greater caregiver burden.,,
Studies have reported that caregivers who live with care recipients in the same house experience a greater burden.
In addition, we measured the burden experienced by the caregivers to improve the feasibility of developing a high-quality indicator in the area of home health care. Assessing their needs may help to improve the level of care toward a specific beloved population and their satisfaction.
1. With regard to the first objective in this study– to discover the characteristics of informal caregivers of adult recipients – we assessed the relationship between the characteristics of caregivers and the Zarit burden scale
In terms of the relationship between burden and gender, the researchers were expecting to find a significant relationship, as women provide care more than men, but there was no significant relation. This result was similar to a study that was conducted in the Netherlands that showed the caregiver burden increased over time for both genders, but they had assessed the predictors that can increase the female burden more than males. Another study showed that the relationship to care recipients' wives and daughters was found to have a greater burden than husbands and sons. As caring for loved ones creates a tremendous burden for caregivers, it can also bring benefits to the caregiver, such as feelings of personal achievement or enjoyment.,
This study showed that most paid caregivers exhibited no burden to a minimal burden compared with unpaid family member caregivers, who exhibited moderate-to-severe burden, which accounted for the majority on the burden scale. This could explain why personal emotional attachment has an effect on caregivers' burden.
In addition, the burden scale increases as the length of care is extended. In our study, caregivers who cared for recipients for <1-year duration exhibited no burden to a minimal burden compared with those who cared for >6 years, who exhibited a moderate to severe burden.
2. With regard to the second objective in this study – to determine the socioeconomic, psychological, and physical consequences facing informal caregivers – the majority of caregivers complained of depression or mood swings (59.7%), in contrast to another study performed in Riyadh, which showed that the majority of the caregivers (50%) complained of musculoskeletal problems
In this study, the Caregiver Burden Scale using the Zarit Burden Interview showed a majority with no burden to a minimal burden (41.1%). However, this result was inconsistent with a study conducted in Riyadh, which resulted in most of the caregivers in the category of minimal to moderate burden (42.9%).
3. With regard to the third objective in the study – to measure caregivers' burdens and their needs in terms of assessing caregivers' needs and associations with the burden score – the majority of the caregivers reported the need for more frequent home health-care visits (51, 41.1%), with a significant relationship with the burden score (P < 0.0005). This was consistent with a previous similar study that reported that approximately 73% need frequent home health-care visits
Less than half the number of caregivers (46, 37%) reported the need for financial support to be able to provide proper health care for the care recipient, as the burden scale increased the need for financial support in return would be increased (P < 0.0005).
The majority of caregivers reported that there is someone who can take over recipient care for them temporarily in excused situations (105, 84.7%), which had a good impact on the burden scale (P = 0.028). Some caregivers (15.3%) have nobody who can take over the responsibility, which could explain why social support has a role in decreasing the burden on caregivers.
In terms of the percentage of caregivers who are insisting on being provided with home health care staff to take care of the recipients for them temporarily in excused situations, the majority (48.4%) were in the category of moderate to severe burden and showed significance (P = 0.007); thus, frequent home health-care visits provide reassurance to the caregivers about their recipient health condition, and it will guide them towards the right track with regard to recipient status and needs.
This study had a few limitations. First, as the sample size was representative of the home health-care unit at King Abdulaziz University Hospital, we cannot generalize the results to the whole population of the city of Jeddah.
Second, the original Zariet burden scale has four main categories, which were no to minimal, minimal to moderate, moderate to severe, and severe burden; during the statistical analysis, the researchers found that the P value could not be computed, as >20% of cells that had a count <5 in the category of severe burden; thus, the researchers had to merge the burden categories of moderate to severe and severe burden into one category to analyze the P values.
| Conclusions|| |
The researchers concluded that most of the caregivers had no burden to a minimal burden. Most of them were family relatives of the care recipients. There was no difference in gender or burden scale among caregivers. The relationship with the care recipient has a negative impact on the burden scale. Psychiatric complaints were the biggest complication among caregivers. Most of the caregivers needed frequent home health-care visits. Psychological support was the method most desired to motivate caregivers.
To decrease the burden on caregivers, we can offer caregivers flexible medical consultations to provide them with better care. Moreover, we assessed their needs and medical equipment to relieve their burden.
Furthermore, we could offer caregivers frequent re-evaluations of their mental health and provide them with psychological support to lessen their burden by telephone, texting, or virtual or personal interactive sessions.
In addition, we may provide the caregivers with educational courses or workshops to improve their skills and to relieve some of their stress, as most of the caregivers requested training on how to deal with emergency situations.
Foremost, the researchers would like to express their sincere gratitude to the ethical committee at King Abdulaziz University Hospital for their facilitating and explaining all the needed details required for the study. Furthermore, we would like to acknowledge the great help received from the participants themselves in the home health-care unit at King Abdulaziz University Hospital for their patience and cooperation.
Financial support and sponsorship
This study was self-funded.
Conflicts of interest
There are no conflicts of interest
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[Figure 1], [Figure 2], [Figure 3], [Figure 4], [Figure 5], [Figure 6]
[Table 1], [Table 2]