Understanding the burden of mental and physical health disorders on families: findings from the Saudi National Mental Health Survey

Abstract

Objective

To assess prevalence and correlation of factors of family burden associated with mental and physical disorders in the general population of Saudi Arabia.

Setting and participants

A secondary analysis of data from the Saudi National Mental Health Survey (SNMHS).

Outcome measures

Mental and physical health disorders of first-degree relatives and objective (time, financial) and subjective (distress, embarrassment) family burden.

Results

We found significant caregiver burden for family members with mental health disorders. Around one-third of the sample was providing care for a family member with a health issue. Within this group, 40% had a mental health diagnosis. 73% of the study population reported experiencing some form of burden as a result of the care they are obligated to provide for their family members. We found the highest burden on male caregivers, in providing care for family members with serious memory disorders, mental retardation, schizophrenia or psychosis, followed by, alcohol and drug disorders, anxiety, depression or manic depression.

Conclusion

Our findings for family burden were statistically significant, indicating potential negative impact on caregiver coping ability with the demands of caring for family members with health issues. A comprehensive review of national mental health policies is required to integrate aspects of community mental health promotion, scale-up prevention, screening interventions and social support to protect against the difficulties of mental illness and reduce the burden on caregivers, the family, society, health system and the economy.

Correspondence to Dr Yasmin Altwaijri; [email protected]

STRENGTHS AND LIMITATIONS OF THIS STUDY

• The subset of the Saudi National Mental Health Survey (SNMHS) national data used in this study is well-placed to provide strong socio-epidemiological evidence estimating the family burden of mental and physical disorders in Saudi Arabia.

• The SNMHS methodology, methods and study instruments, derived from the World Mental Health survey initiative, have been translated and validated for use in the Saudi population, and clinically appraised for robustness and accuracy of diagnostic criteria.

• It was not within the scope of this study to explore the impact of complex care dynamics such as shared burden of care between family members in the same household.

• The current study did not explore environmental issues such as access to transportation or healthcare services, or other aspects such as caregiver quality of life and physical health.

Introduction

Caring for a family member with a health disorder can have significant negative impact on caregiver quality-of-life.^1–3 Internationally, the prevalence of mental disorders is increasing, becoming the second leading cause for disability in individuals, thereby posing a major public health concern.^1–4 A person with a mental disorder requires considerable social support and caregiving, which is usually provided by family, and can considerably impact their prognosis and recovery.^2–5 There has been increasing attention on the progressive deinstitutionalisation of mental health services and the resulting impact on informal caregivers; as the greater the intensity of the mental disorder, the higher the associated levels of family burden such as distress, embarrassment, stigma and time and money spent on informal caregiving.^{1 5–7}

In terms of global efforts, the WHO World Mental Health (WMH) survey initiative has carried out large-scale psychiatric epidemiological surveys of common mental disorders in countries worldwide, using standardised methods to provide data on prevalence, burden and treatment of mental disorders to support evaluation and planning for mental health policies.^{4 7–9} A study by Viana et al found health disorders posed significant burden on caregivers by way of financial burden, psychological distress, emotional distress or embarrassment and time strains.¹ Viana et al also found gender differences in the burden of care, with a higher burden on female caregivers, and an increased burden of care for parents, spouses and children.¹ Shahly et al studied older caregivers and found 40% had relatives with serious health conditions, which was linked to significant time, financial costs and emotional burden, particularly among women caring for spouses and children.¹⁰ Souza et al also studied caregivers in Brazil and found significant burdens on older female caregivers.¹¹

In Saudi Arabia, there is limited research on the burdens of informal caregiving. Mutair et al¹² reported on cultural context and the importance families place on providing care for their own as part of their religious obligations and duties.¹² AlZahrani et al found providing care for a family member with a mental disorder was a source of disruption of everyday life routines, dissatisfaction, tension and worry. These issues were more prevalent among caregivers who were <30 years old, living with spouses or children and for smaller-size families, or those who spent extended amounts of time providing care.⁶

AlFakhri et al found family caregivers of patients with dementia faced considerable burden, reduced quality of life and a risk of developing clinical depression.¹³ Al-shareef et al found 69% of caregivers had depression due to care burdens for family members with mental disorders, and an increased risk for caregivers older in age, female, providing care for spouses or caregiving over 4 hours per day.¹⁴ Sharif et al found that caregivers’ provision of consistent spiritual, emotional and psychological support caused stress. Caregivers also had difficulty maintaining employment for themselves due to their commitment to their family member with a mental disorder and struggled with the associated stigma.¹⁵ Alabdulaziz and Cruz found healthcare providers struggled to incorporate family dynamics into the care setting despite their understanding and appreciation of its cultural and religious relevance in the country.¹⁶ Most recently, Alshammari et al has found increased caregiver burdens on women of older age.¹⁷ These previous family burden studies were all based on relatively small samples from singular cities or particular healthcare facilities in Saudi Arabia, and to the best of our knowledge, there are no published national estimates of family burden in Saudi Arabia yet.

The Saudi National Mental Health Survey (SNMHS), part of the WMH survey initiative, is the first national cross-sectional community-based, epidemiological study examining the prevalence and correlates of common Diagnostic and Statistical Manual of Mental Disorders, fourth edition (DSM-IV) mental disorders in a representative sample of the Saudi population.^{18 19} The data from the SNMHS are well-placed to verify and provide strong socio-epidemiological evidence to support the purposes of this study and estimate the burden of mental and physical disorders on family caregivers in Saudi Arabia.^{6 14 15}

The aim of this study was to answer the following question: What are the burdens families face when dealing with family members with physical and mental health issues? Findings from this study will provide significant information to policymakers and stakeholders working on improving the quality of life of family caregivers. This is also in alignment with the goals of the Saudi health transformation programme and the ambitious Vision 2030.^{20 21}

Methods

Sample

As detailed in previous publications, the SNMHS is a mental health assessment survey carried out in a nationally representative sample of households in Saudi Arabia.^{18 19 22–27} The study was based on a stratified multistage clustered area probability sample of 4302 Saudi households in 11 administrative regions of the country. The survey was administered face-to-face to randomly selected Saudi citizens (aged 15–65 years) in their homes. A total of 4004 interviews were completed during the period from 2014 to 2016, with pauses for the holy month of Ramadan and the summer (due to high temperatures), and were carried out by trained lay interviewers. Most of the interviewers were hired locally from each region and were supervised by a group of team leaders. At no point in time were there >30 interviewers active in the field.

The SNMHS used a two‐part case-control sampling design to reduce the interview burden on respondents who did not meet criteria for any of the core mental disorders assessed in the survey. Part I assessed core disorders and Part II assessed disorders of secondary interest and a wide range of correlates. The Part I sample was weighted to adjust for differential probabilities of selection within and between households and to match sample distributions to population distributions on the cross‐classification of key sociodemographic and geographic data. The Part II sample was then additionally weighted for the undersampling of Part I respondents without core disorders, which led the prevalence estimates of core disorders in the weighted Part II sample to be identical to those in the Part I sample. More details regarding sample design and field procedures are described elsewhere.^{18 23}

In line with our aim for this study, the weighted Part II sample (n=1853) and an extracted sample of 605 respondents who had family members with health issues was used. The survey had an estimated individual-level response rate of 61%. The response rate was comparable to other WMH surveys in high‐income countries (eg, 60% in Australia and 57.8% in Germany).²⁸

Measures

Instrument

The original SNMHS studies used the WHO Composite International Diagnostic Interview (CIDI) 3.0, a fully structured interview designed to be lay administered, and generate estimates related to prevalence of common DSM-IV mental disorders.^{7 18} The version of the CIDI that was used to conduct the SNMHS interviews was based on those described in the study by Shahab et al, translated and validated for use in the Saudi population, and training was provided for the lay interviewers to conduct them face-to-face according to strict fieldwork protocols and procedures to ensure data quality.^{22 23} Clinical reappraisal of the CIDI instrument was recently conducted to determine the extent of the accuracy of the diagnostic classifications as described in the study by Kessler et al.²⁴

Mental health disorders

Twelve-month disorders assessed by the CIDI instrument criteria include the following: anxiety disorders (panic disorder, generalised anxiety disorder, agoraphobia without panic disorder, social phobia, post-traumatic stress disorder, obsessive-compulsive disorder, separation anxiety disorder), mood disorders (major depressive disorder, bipolar disorder I or II), impulse control disorders (conduct disorder, attention deficit hyperactivity disorder, intermittent explosive disorder), substance use disorders (alcohol and drug abuse and dependence) and eating disorders (anorexia, binge eating disorder, bulimia).

Family burden

Family burden as one section of Part II of the CIDI was defined as burden that respondents experienced in their roles as caregivers of relatives of the first-degree (parents, siblings, spouses or children) living with them who had health issues. Burden was defined as both subjective (eg, psychological distress, embarrassment) and objective (eg, time, money, informal care-giving such as keeping them company, washing, dressing or eating, managing requirements such as paperwork, housework, transportation or medical visits, adhering to medication regimens or providing emotional support) to a family member or relative in the same household.¹ In this section of the CIDI, respondents were asked to rate on a scale how their family members’ health issues impacted them in terms of their time, energy, emotions, finances and their ability to pursue personal daily activities, and to estimate the resulting amount of time and monthly expenditure dedicated to providing care. The respondents answered questions on family burden as related to health issues (cancer, serious heart disorders, permanent physical disability such as blindness or paralysis or any other serious chronic physical disorder) and mental disorders (serious memory disorders like senility or dementia, mental retardation, alcohol or drug disorders, depression, anxiety, schizophrenia or psychosis, manic depression or any other serious chronic mental disorder) of their close relatives (parents, siblings, children, spouse/partner).

Sociodemographics

As for the socio-economic variables of interest in this study, we assessed survey respondents for age (16–65 years), gender (male or female), educational level (low, low-average, high-average, high), income status (low, low-average, high-average, high) and marital status (married, separated, divorced, widowed or never married).

Statistical analysis

Family burden prevalence as related to family health issues was calculated using cross-tabulations. All cross-tabulations were done using the PROC SURVEYFREQ procedure in SAS V.9.2 (SAS Institute, Cary, North Carolina, USA). Associations of mental health diagnosis with family health characteristics were generated using a multivariate logistic regression model, generated using the PROC LOGISTIC procedure and reported ORs and 95% CIs with statistical significance at p>0.05.

Transparency and openness

We report our methods for determining the sample size for the study, data exclusions and manipulations, study measures, following the Journal Article Reporting Standards.²⁹ This study’s design and analysis were not preregistered. All data are readily available by emailing the corresponding author. We used the Strengthening the Reporting of Observational Studies in Epidemiology cross-sectional checklist when writing our report.³⁰

Patient and public involvement

Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Results

We found that 27.42% of respondents had family members with health issues. Of these, 40.23% were diagnosed with a mental health condition (table 1). We found that 73.4% had some form of burden entailed in caring for family, with burden of time being most prevalent (61.8%), followed by feelings of distress (34.7%), financial burden (10.3%) and feelings of embarrassment (8%).

Table 1

Prevalence and reported burden of family health issues

	Full sample (n=1853)			Subsample with family health issues (n=605)
	N	%	SE	N	%	SE
Prevalence of family health issues
Parents	316	15.06	1.36	316	54.92	3.43
Spouse	43	1.36	0.28	43	4.95	1.01
Child	48	1.81	0.44	48	6.59	1.57
Sibling	222	9.79	1.17	222	35.69	3.44
Any physical	477	21.19	1.53	477	77.29	2.97
Any mental	269	11.03	1.07	269	40.23	3.30
Any physical or mental	605	27.42	1.71	605	100.00	0.00
Mean*	1853	0.54	0.02	605	1.64	0.04
Burden of family health issues
Any burden	456	20.13	1.53	456	73.41	2.95
Any time	381	16.96	1.40	381	61.83	3.37
Any financial	85	2.83	0.47	85	10.33	1.67
Distress†	238	9.52	1.14	238	34.71	3.40
Embarrassment†	66	2.19	0.42	66	8.00	1.52

Part II weights were used.

*Mean number of family health issues.

†A lot or some distress or embarrassment reported in response to questions about intensity of these feelings.

Respondents spent a mean of 16 hours per week providing care for family members with health issues. We found a mean spend of 23% of median household income to provide care for family members with health issues (table 2).

Table 2

Individual-level and population-level time and financial burdens of family health issues

	N	Mean
Time (hours per week)
Individual level (mean)*	375	16.68
Per 100 in the population (total)†		282.00
Financial (mean % of median household income)
Individual level‡	85	23.28
Per 100 in the population§		0.65

Part II weights were used.

*Individual-level reports of hours per week spent with or doing things for ill family members.

†The population-level estimate was obtained by multiplying the individual-level estimate by the proportion of respondents who reported spending any time.

‡Individual-level reports of financial burden were converted to percentages of median household income (Saudi Riyal 8928.57). The means of these transformed scores among respondents who reported any financial burden are reported here. For example, the mean monthly financial impact of health issues (due either to out-of-pocket expenses or foregone income) among respondents who reported such costs was equal to 23.28% of the median monthly household income.

§The population-level estimate of financial burden was obtained by multiplying the individual-level estimate by the proportion of respondents who reported such burdens. The resulting estimate can be interpreted as the total financial costs of family health issues as a percentage of total household income.

When considering the differential family burden by type of relative with a health issue, the odds of having any type of burden to be more likely/higher when caring for a spouse (OR 3.44), but the burden was significant when caring for a child (table 3). As for the burden on time, the odds were significantly higher when caring for a spouse (OR 26.98), parent (OR 24.19) and siblings (OR 9.82). The odds for financial burden were significantly higher among respondents who have a relative with health issues, regardless of the relative type, compared with respondents whose relatives do not have health issues (table 3).

Table 3

Differential burdens of family health issues by type of relative

	OR	95% CI	Wald χ2
Any burden
Parents	1.25	(0.82 to 1.91)	1.09
Spouse	3.44	(0.98 to 12.10)	3.69
Child	0.33	(0.16 to 0.69)	8.80*
Siblings	1.24	(0.80 to 1.92)	0.95
Any time
Parents	24.19	(17.26 to 33.90)	341.83**
Spouse	26.98	(9.48 to 76.85)	38.08**
Child	2.35	(0.80 to 6.93)	2.42
Siblings	9.82	(6.51 to 14.80)	118.95**
Any financial burden
Parents	6.61	(3.59 to 12.19)	36.59**
Spouse	7.42	(2.32 to 23.65)	11.46**
Child	6.22	(2.09 to 18.56)	10.75*
Siblings	4.44	(2.37 to 8.32)	21.63**
Distress
Parents	8.97	(6.22 to 12.93)	138.19**
Spouse	5.78	(2.14 to 15.65)	11.95**
Child	4.88	(1.84 to 12.92)	10.17*
Siblings	8.32	(5.55 to 12.47)	105.32**
Embarrassment
Parents	5.62	(2.86 to 11.04)	25.10**
Spouse	3.95	(1.00 to 15.54)	3.86*
Child	2.58	(0.69 to 9.62)	2.01
Siblings	4.19	(2.09 to 8.40)	16.26**
Amount of time (among those devoting any time)
Parents	0.34	(0.21 to 0.53)	22.47**
Spouse	1.68	(0.73 to 3.85)	1.50
Child	0.73	(0.28 to 1.95)	0.39
Siblings	0.96	(0.62 to 1.50)	0.03
Amount of financial burden (among those with any)
Parents	0.28	(0.09 to 0.87)	4.83**
Spouse	0.23	(0.05 to 1.22)	2.98
Child	0.68	(0.15 to 3.13)	0.24
Siblings	0.71	(0.26 to 1.95)	0.45

Part II weights were used.

*P<0.05, **p<0.001.

Respondents were significantly more likely to experience distress when caring for a parent (OR 8.97), followed by caring for a sibling (OR 8.32), a spouse (OR 5.78) and a child (OR 4.88). For embarrassment, odds were significantly higher when caring for a parent (OR 5.62), followed by caring for a sibling (OR 4.19) and a spouse (OR 3.95) (table 3). When evaluating the amount of time burden and financial burden separately, we found that having a parent with a health issue was significantly associated with reduced odds of time burden (OR 0.34) and financial burden (OR 0.28) (table 3).

We found significant variation in the type of family burden associated with the type of health issue (online supplemental table S1). For physical health issues, having a family member with a heart disorder, physical disability or other serious chronic illness was associated with higher odds of time and financial burden, and lower risk for reporting embarrassment and distress. Having a family member with cancer was associated with significantly reduced odds of any burden (OR 0.30) and increased odds of financial burden (OR 4.18).

The mental disorders studied were significantly associated with increased odds of several burden outcomes for caregivers. Manic depression was associated with significantly increased odds of distress (OR 8.34). Caring for family members with a serious memory disorder posed twice the risk for any burden (OR 3.52), 44 times the risk for time burden (OR 44.99) and 10 times the risk for financial burden (OR 10.31); and lower risk for financial expenditure (OR 0.23), amount of time spent (OR 0.20) and distress (OR 0.16) (online supplemental table S1). The burden associated with caring for a family member with schizophrenia or psychosis was significantly higher (OR 5.13) than those associated with other mental disorders (online supplemental table S1).

In considering the sociodemographic factors and the differential burden, we found that relative to males, females were significantly less likely to be associated with burden (OR 0.58), as well as spend a less amount of time providing care for family members with health issues. As for age, we found that those aged 31–49 years were most likely to experience a time burden for family caregiving and distress, in comparison with other age categories. As for level of education, we found burden to be significantly less likely to be associated with respondents of high average level of education, for time, distress and embarrassment experienced. As for marital status, the likelihood of burden was highest for those who were married, however, the financial burden was found to be significantly higher for those who were separated/divorced or widowed (OR 3.83). In considering income levels, we found that respondents of high average income are significantly more likely to spend time in providing care for the family members with health issues (online supplemental table S2).

Discussion

General family burden

We found over one-third of the study sample to be providing care for a family member with some form of health issue. Within this group, 40% had a mental health diagnosis. Approximately 73% of the study population reported experiencing some form of burden because of the care they provide for their family members. Our findings correlate with previous studies that show a high rate of depression, stigma and time burden among caregivers.^{13–15 17} We found significant levels of burden in caring for family members with serious memory disorders or mental retardation, which points to issues in terms of the ability to cope with the care demands. On a population level, being required to direct time, energy, attention and finances to provide care to a family member with a mental disorder will certainly detract from a person’s ability to live their lives fully.^{1 10 11}

We found female gender to be significantly associated with a lower burden of caregiving. This is relevant to note as it is in contrast to previous studies that found female caregivers faced higher burdens and could be reasoned to reflect the influence of women’s perceptions of their roles and their reporting of the burden.^{11 14 15 17} This could also be due to the rapidly shifting social and gender dynamics in Saudi society and bears further study and exploration for potential self-reporting or social context issues.³¹

As for age, those aged 31–49 years were most likely to experience any burden of family caregiving, most significantly time burden, followed by distress experienced as a result. This is also important to note for Saudi Arabia, as this is the age range for peak work and career productivity, in conjunction with the shifting gender dynamics and the increasing participation of women in the workforce.^{20 32} We found those with low-average levels of education were at highest risk for burden across the board, and this was significant for time, distress and embarrassment, and in alignment with previous studies.^{1 11}

Time burden

In our study, 61% of the study population reported time burden, spending an average of 16 hours per week providing care to their family members with a health disorder. We found the general burden and burden on time to be highest when caring for a spouse, followed by caring for a parent or a child. These findings reflect what was illustrated by previous studies on the impact of caring for a family member with a mental disorder.^{1 5 10 11} The amount of time burden was highest when caring for a spouse, and although this particularly was not statistically significant it is relevant to note that the day-to-day care requirements for a spouse with health issues are considerably burdensome and time-consuming, given that the spouse is expected to be more independent and of a support to the family.^{11 15} However, further exploration of these aspects is required. We found the burden on time to be highest when caring for a family member with serious memory disorders, mental retardation, schizophrenia/psychosis, followed by anxiety, alcohol/drug disorders, depression and manic depression, and these were statistically significant. Our findings align with the realities of dealing with these types of health issues in family members, as they require intense attention and devotion to support in managing daily duties; in making decisions, choices or taking action throughout the day, attending healthcare visits and maintaining their treatment or medication regimens and personal safety.⁶ Our findings again correlate with several others who found a higher burden for care of parents, spouses and children than for siblings.^{1 6 10 11 14 33}

Financial burden

Respondents with family members with health issues were significantly more likely to experience financial burden than those without, regardless of relation type. Approximately 10% reported financial burden, spending around 20% of their household income on caregiving. The amount of financial burden was more likely to be higher when caring for a sibling, followed by a child and a spouse. We found the highest financial burden in caring for family members with serious memory disorder, alcohol/drug disorders, mental retardation, schizophrenia/psychosis, depression, anxiety and manic depression. Financial burden was significantly higher for those separated/divorced or widowed. We found significant results for the amount of time spent by those with high average income on providing care for the family members with health issues, which is also in alignment with Saudi social context and average spending rates per income brackets in the country.³⁴

Distress and embarrassment

Regardless of relative type, distress and embarrassment were significantly more likely to be observed among respondents who have a family member with a health issue. Thirty-four per cent of respondents reported distress and 8% reported embarrassment. As for types of mental disorder, the highest levels of distress were found among respondents caring for a family member with manic depression, followed by depression, anxiety, mental retardation, serious memory disorder, alcohol or drug disorders and schizophrenia/psychosis. The highest level of embarrassment was found in caring for a family member with a serious memory disorder, followed by manic depression, depression, mental retardation, anxiety, schizophrenia/psychosis and lastly for alcohol/drug disorders. This could be due to the multiple misconceptions, negative attitudes and significant stigma towards mental disorders in Saudi society, previously discussed by Alangari et al.³⁵ There is a low level of mental health literacy in Saudi society, and aversion to seeking mental health support in the individuals suffering and caregivers due to stigma associated with cultural and religious beliefs about mental disorders. This includes concerns around lack of faith or the evil eye, black magic or possession and the perception of mental disorders as a source of weakness, embarrassment or shame.^{6 14 15 35} Recently, there has been a shift in the level of understanding and social acceptance for mental health issues that are neurologically oriented, such as memory disorders (dementia or Alzheimer’s disease), which may explain the lower level of embarrassment or stigma socially where these disorders are concerned, but nevertheless creates significant distress for a caregiver, especially one who is a family member and emotionally impacted by these health issues.^{13 35 36}

Policy and practice implications

As mental disorders are some of the leading causes of disability worldwide, the burden of mental disorders on society is large due to the complexities of high prevalence, and impact on role functioning and quality of life, therefore policy must be geared towards more community-oriented support and preventive services to reduce burden and minimise the impact on the individual as a caregiver, the family unit and society at large.^{8 18 21 37 38} BinDhim et al³⁹ have suggested that monitoring mental health status on a population level is a valuable source of information on mental health. The establishment of a national mental health surveillance system should incorporate elements to suitably assess for caregiver burden, allowing decision makers to flag issues and provide suitable interventions in the community and within the healthcare service.³⁹

Our findings emphasise a serious need to further evaluate the types of support required by family members and develop means of access to this support, either in a physical sense for the day-to-day care duties, or in terms of mental and emotional health support for the caregiver from the healthcare service or home healthcare or using virtual support options, or financial support, minimising burdens of care, especially on time and building capacity to provide the care required for their family members, improving quality of life for each person involved, which will reflect overall on the health and well-being of society. Providing better community mental health services and enhanced mental health training for primary care doctors, general practitioners, nurses and social workers along with cost-effective screening procedures and timely evidence-based treatments out-of-hospital and increase the capacity of professionals to provide holistic support to family caregivers may serve in this drive towards the reduction of the burden of mental health disorders on the population.^{12 15 16 40}

It is relevant to note the strengths of this current work. As a subset of the SNMHS, it provides strong socio-epidemiological evidence estimating the burden of health issues on families in Saudi Arabia. The SNMHS methods, and study instrument, derived from the WMH survey initiative, have been validated and clinically appraised for robustness and accuracy of diagnostic criteria.²⁴ As for limitations, the scope of the survey did not further explore complex care dynamics such as shared caregiving within the household. Also, this current study did not assess associations with environmental issues such as access to transportation or healthcare services and did not entail details of caregiver physical health and quality of life. Previous SNMHS studies have also discussed the limitations of social desirability bias resulting from perceived stigma or embarrassment on the self-reporting and responses during data collection, which may have implications for the underestimation of findings.^{22 31 35}

Further avenues for research

Research is needed to explore the impact of informal caregiving on family dynamics and caregiver quality of life, and interventions designed in-tune with population needs for support both in the community and within the healthcare service. It is necessary to increase social support for families coping with mental disorders and mental health literacy from a very young age to improve coping skills and reduce burden associated with mental health issues. It is also important to integrate mental health promotion and screening for mental disorders into all six patient-centred streams of care for all stages of life: (Keep Me Well, Chronic Care, Urgent Care, Planned Care, Safe Birth and Last Phase) as part of the National Mental Health Strategy and Health Sector Transformation Programmes currently being developed.^{20 21} The findings of this study encourage the development of more comprehensive mental health policies and investment into community resources for health promotion and prevention of mental disorders before they become more of a significant burden on the health system and society.^{20 21}

Conclusions

Having a family member with health issues is a significant predictor for family burden in several categories. Over one-third of the study population were providing care for family members with health issue, 40% of which were mental health disorders. Females were less likely to experience family burden, and over 70% of caregivers were experiencing some form of burden. The highest burden was in caring for those with serious memory disorders, mental retardation, schizophrenia or psychosis, alcohol and drug disorders, followed by anxiety, depression or manic depression. These burdens are expected to have a major impact on individuals’ ability to maintain strong coping skills and manage the demands associated with informal caring for family members. The findings from this study support efforts to develop a more robust understanding of the intricacies of mental and physical disorders and impact on the informal caregiving infrastructure in the Saudi population, moving into the future as the population increases in age and multiple comorbidities and the continued establishment of home-healthcare services. It is increasingly important to consider wide-ranging interventions to promote awareness, education, early detection and screening and implement social support programmes, to alleviate burden and reduce its negative impact on the productivity, well-being and quality of life of caregivers. The findings will also inform mental health policy development, planning and implementation of healthcare reforms and the patient-centred model of care, incorporating more robust mental health promotion, prevention and wellness programmes.^{20 21}

We would like to thank the National Center for Mental Health Promotion for their support in developing this manuscript. The Saudi National Mental Health Survey (SNMHS) is carried out in conjunction with the WHO World Mental Health (WMH) survey initiative, which is supported by the National Institute of Mental Health (NIMH; R01 MH070884), the John D. and Catherine T. MacArthur Foundation, the Pfizer Foundation, the US Public Health Service (R13-MH066849, R01-MH069864 and R01 DA016558), the Fogarty International Center (FIRCA R03-TW006481), the Pan American Health Organization, Eli Lilly and Company, Ortho-McNeil Pharmaceutical, GlaxoSmithKline and Bristol-Myers Squibb. We thank the staff of the WMH Data Collection and Data Analysis Coordination Centres for assistance with instrumentation, fieldwork and consultation on data analysis. None of the funders had any role in the design, analysis, interpretation of results or preparation of this manuscript. A complete list of all within-country and cross-national WMH publications can be found at http://www.hcp.med.harvard.edu/wmh. We thank Beth-Ellen Pennell, Yu-chieh Lin and other staff at the Survey Research Center, University of Michigan, Ann Arbor for supporting the SNMHS with its design and implementation. We also thank the SNMHS team, including those that worked with us in the past, for their contributions to the survey. The authors also wish to express their sincere appreciation for the efforts of Dr Salemah AlMutlak in the Department of Basic Sciences at the College of Science and Theoretical Studies at the Saudi Electronic University in reviewing the statistical analysis and reporting for the manuscript.

Data availability statement

Data are available on reasonable request. Quantitative data for this study are available by emailing the corresponding author.

Ethics statements

Patient consent for publication

Not applicable.

Ethics approval

All SNMHS field procedures including informed consent were approved by the Institutional Review Board at the King Faisal Hospital and Research Center, Riyadh (RAC #2091093). Participants gave informed consent to participate in the study before taking part.

Footnote

Twitter @hzedan

Presented at Study was presented at the 6th International Conference on Disability and Rehabilitation in Riyadh, Saudi Arabia from 4 to 6 December 2022.

Contributors HSZ, YA, LB and SH made substantial contributions to the conception and design of the work. YA, AA-H, ASA-S and LB made substantial contributions to the acquisition of the data. MTN and SH made substantial contributions to the analysis of the data. HSZ, LB, SH and YA made substantial contributions to the interpretation of the data. HSZ, LB and SH drafted the text. HSZ, MA, AA-H, ASA-S and YA revised the text critically for important intellectual content. HSZ, LB, MA, SH, AA-H, ASA-S, MTN and YA approved the final version of the manuscript for publication. YA is the guarantor and agrees to be accountable for all aspects of the work, ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. All authors read and approved the final manuscript.

Funding The Saudi National Mental Health Survey is conducted by the King Salman Center for Disability Research; funded by Saudi Basic Industries Corporation, King Abdulaziz City for Science and Technology, Ministry of Health (Saudi Arabia) and King Saud University. Funding in-kind was provided by King Faisal Specialist Hospital & Research Center, and Ministry of Economy & Planning, General Authority for Statistics, Riyadh.

Competing interests None declared.

Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Provenance and peer review Not commissioned; externally peer reviewed.

Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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