Health and social service providers interviewed for this study provided in-depth insight into the health and social needs of older Syrian refugees, with particular focus on non-communicable diseases and mental health problems, access to services and ageism as underlying drivers of health inequalities. They also made concrete recommendations as to how the aid response could better serve older refugees.
Health problems experienced by older Syrian refugees
Reflecting on the health situation of their beneficiaries, Lebanese health and social workers highlighted that NCDs were the most widespread among older Syrian refugees. Leading among NCDs was diabetes, followed by blood pressure, cholesterol and heart conditions. Many older refugees also suffered from bone and joints related diseases which rendered them immobile, home bound and prone to experience isolation and loneliness. A psychologist explained, “in addition to diabetes and blood pressure, many older refugees who visit the clinic suffer from back and leg problems which confined them to home, increasing their social isolation and affecting their mental health.”
Study participants also discerned other, less prevalent, diseases among older refugees, which they believed were mainly triggered or exacerbated by refugees’ poor living conditions. For instance, pulmonary disease was connected to cold and draughty living quarters, or to the burning of tyres for heating. According to one of the nurses, “…older refugees suffer more frequently than younger refugees from pulmonary diseases in winter due to lack of heating and to overcrowding whereby viruses spread rapidly among the residents of the same tent or house.” Lice, scabies and other skin problems were also considered to be widespread among older Syrian refugees who were neglected by their families and who were unable to take care of themselves due to lack of water and sanitation. Additionally, diet and malnutrition were recognised to disproportionately affect older Syrian refugees. One GP reported,
Many of the older refugees’ physical health problems are caused by lack of hygiene, access to water, and malnutrition (…). Sometimes, 30 people live in the same tent, children and young adults go to school or to work and rarely bathe. This causes skin diseases like scabies. As for malnutrition, often a family would only have bread and tomatoes as a meal. Older adults are more sensitive to malnutrition which diminishes their immune system making them less able to fight even a simple flu or diarrhoea.
Health and social workers also emphasised mental health and psychosocial problems experienced by older Syrian refugees. It was considered that these rates were significantly higher among older refugees compared to other age groups receiving care at their facilities. Study participants estimated that more than 50% of their older Syrian refugee patients suffered from depression. Other mental health issues faced by older Syrian refugees included anxiety, post-traumatic-stress disorder and psychosis. Mental health problems were believed to be co-morbidities connected to multiple physical health problems and pains. A mental health nurse said, for instance that, “physical and mental health cannot be separated as physical illnesses negatively impact on the mental health. This is particularly true in the case of older refugees who suffer from multiple chronic diseases.”
Mental health and psychosocial problems were further linked to a sense of hopelessness. Compared to younger people, older Syrian refugees were believed to have fewer opportunities and limited resources to change their situation. A counsellor reported that her patients often said, “I want to die and get done with this life, I have no hope anymore.” A psychologist exemplified the notion of hopelessness among her patients by referring to a specific case—a woman in her sixties who experienced physical and emotional abuse from her husband. The older woman believed her situation was hopeless and she felt she was unable to leave the abusive relationship, because she could not sustain herself. The psychologist explained she could neither find a job at her age, nor was she eligible to benefit from the UN cash assistance, which tends to be given to younger refugees who have work prospects. Such feelings of hopelessness and helplessness, health practitioners reasoned, led to increased social isolation of older Syrian refugees which, in turn, was believed to negatively impact on their mental and physical wellbeing.
Healthcare and social services
Health practitioners and social workers explained that the Lebanese government does not provide health coverage for refugees. Consequently, refugees depended on international and local NGOs for their health and wellbeing. NGOs provided services at the primary healthcare level and coverage at the secondary healthcare level. Study participants viewed the service provision and the coverage as vital, but nevertheless far from filling the gap and, thus, insufficient to serve the needs of refugees, especially the older ones.
At the primary healthcare level, healthcare expenditures of registered refugees were subsidised by UNHCR. One GP explained, “UNHCR covers 85 percent of the PHC [primary health care] consultation fee, subsidises medication for registered refugees and offers free diagnostic tests for those who are above 60. This is more than the government’s coverage for Lebanese people.”
While the UNHCR’s healthcare coverage was generally seen as generous, it was also recognised as insufficient help for all older refugees considering that the poverty was so great among them. Most interviewees stated that their NGOs were often requested to step in to cover PHC expenses, especially for unregistered, older refugees who fell outside of UNHCR’s mandate, when it became clear they were unable to afford the healthcare costs. As one of the social workers explained, “We do not turn down unregistered refugees whose healthcare is not covered by UNHCR, we take them in charge.”
Besides stepping in to provide health coverage, interviewees informed us that their NGOs provided services for registered and unregistered older refugees. Services included specialised health consultations, laboratory tests, medication, dental care, health awareness raising sessions and psychological support. Two of the NGOs included in our study were trained by an international NGO who specialised in ageing and, consequently, offered more targeted services for older refugees, such as NCD programmes as well as psychosocial support programmes. In two other NGOs, case managers said they worked specifically with older refugees as part of the UN PWSN programme (Persons with Specific Needs: mentally ill, single mothers, disabled, older adults) which offers shelter, cash assistance and psychological support. However, as one of the case managers clarified, “Very often older refugees do not qualify for these assistances for failing to meet the criteria which is often linked to work prospects that older people lack.”
However, practitioners considered health and social services insufficient for older refugees at the primary level. They explained that specialist services, such as MRIs and CT scans, were unavailable in PHCs and most medications commonly needed by older refugees suffering from various comorbidities were not covered or unavailable. Other specialised services, such as dental services, had to be paid out of pocket as they were neither covered nor subsidised by UNHCR or the NGOs. This was considered hugely problematic as dental diseases were perceived widespread among older Syrian refugees, which in turn was believed to contribute to their malnutrition. In addition, it was explained that the need of older refugees for mobile clinics, mental health and psychosocial services was much greater than that which the NGOs were offering.
Speaking of mental health and psychosocial support, one social worker reflected, “The aid response priority is for physical health, medication and tests when it comes to older adults (…) whereas recreational activities are very important because older refugees are extremely isolated which leads to mental and physical challenges.” The scarcity of such programmes meant however that older refugees were less able to build social connections, get involved in the community and engage in recreational activities as they were mainly confined at home. Such confinement, in turn, was considered to increase social isolation and loneliness which were believed to be directly linked to the development of poor mental and psychosocial health.
At the secondary healthcare level, the respondents informed us that UNHCR only covered 75% of the cost of life-threatening health conditions, and that too only for registered refugees. This puts NGO workers in a difficult position as their older clientele suffered from health problems and complications which were not always immediately life threatening, but, highly debilitating. Consequently, it was difficult to provide affordable secondary healthcare to this population. Instead, study participants explained that their NGOs relied on personal contacts in hospitals or among other NGOs whom they persuaded to either provide healthcare or financial support as an act of charity to their older refugees. One GP said, for instance, that older, unregistered refugees were especially “at the mercy of (…) NGOs who would cover the cost of their secondary care or they would borrow money from family or friends.”
Vital secondary care services, such as cancer treatment, were not covered by either UNHCR or the government for refugees. A social worker stated that this “leaves older refugees begging for private donations or seeking treatment in Syria.” So, older Syrian refugees suffering from health problems, such as cancer, were often forced to go on dangerous journeys back to their war-torn country where they could access cancer treatment for free. However, such journeys were not possible for all. One nurse reported, “Often older refugees suffer mobility problems preventing them from going through illegal and dangerous pathways. In addition, the higher rates of poverty among them compared to younger refugees prevented them from being able to afford cost of transportation.”
Such missing or insufficient services were partly attributed to a lack of funding and trained staff which were directly linked to the multi-layered, age-based discrimination that will be explored in the following section.
Ageism as an underlying social determinant of health
All study participants considered ageism as one of the major underlying drivers for the health and social challenges experienced by older Syrian refugees. Ageism, they explained, was multi-layered, playing out at the levels of aid agencies, families and individuals.
The aid sector was perceived as not attuned to the needs of older refugees’ in that programmes focused mainly on children, women (including women empowerment) and young adults when providing social support and medical care. One nurse said, “The response prioritises vaccines, children and reproductive health. We need to start looking at older refugees as a priority (…). Funds are not focused on older adults, maybe because they are not worth the investment anymore?” One social worker noted that although there are often “campaigns to provide hearing aids and glasses, [they are mainly directed at] children and young adults so they can go to school or work.” The social worker clarified that it is mostly the donors, rather than the NGOs themselves, who drive the aid agenda, as they specify not only the kind of aid they would like an NGO to offer but also the targeted population who is supposed to benefit from the donations. As older refugees are not high on the donors’ agenda, they are not perceived to be a priority or a central part of aid provision. Consequently, vital medical and assistive aids fail to be provided.
Additionally, interviewees noted that older Syrian refugees were excluded from livelihood programmes in that they were considered to be too old to earn a living no matter their mental and physical capability. One of the social workers said, “Older refugees are excluded from vocational training programmes as well as the PCAP [Protection Cash Assistance Programme] because they cannot have a plan for their life, a plan to work and to become independent (….). Our NGO tries hard to get them at least the emergency cash assistance which is given only for one month but even this assistance is often rejected for those above 60 years old.”
Ageism at the level of aid agencies was perceived as a physical barrier to healthcare access. It was explained that most NGO clinics were not age-friendly. Only two NGOs that participated in this study had developed age-friendly centres and these were the NGOs that collaborated with the INGO specialised in ageing issues. One of the nurses explained, “We refurbished all our centres to accommodate older adults: accessible toilets, ramps, comfortable waiting areas.” According to the same nurse, her NGO is one of the very few that invested in such refurbishment, not only due to lack of funding, but also because of a lack in awareness about older people’s special needs.
On the level of the family, study participants observed ageism in various forms. They reported that family members often talked down to older people. For instance, a counsellor referred to a 74-year-old refugee who had told her, “I just want to be loved, I don’t want my family to dismiss me and laugh at me when I do something wrong.” Such dismissal was considered to be directly linked to physical neglect. A nurse said that during one of her home visits she “found the older refugee sitting alone in the corner with dry food in her plate, untaken medication, uncut nails and very dirty hair.” Similarly, another nurse highlighted,
An older refugee in her early 60s was brought to our NGO by her neighbour. She was fainting due to untreated diabetes and had lice in her hair due to lack of hygiene. Her children live in Lebanon but in another village. Her neighbour, an older person herself, was the only one who took care of her, she let her stay with her until she got better and now, she went back to Syria alone.
Study participants reported that family neglect was experienced more by older women compared to older men. Women, it was explained, experienced a double jeopardy as they suffer from disadvantages accumulated over the life-course due to gender-based discrimination which, in turn, makes them more vulnerable as older refugees. One of the mental health nurses noted,
Older women refugees are more neglected than men because Syrian men are more respected by their offspring (…). This is one of the reasons why older women refugees are more prone to mental illnesses than men (…). These illnesses become even more widespread as older women refugees get older as they become more ill, less independent and less productive.
Interviewees also thought that neglect from family members constituted one of the attitudinal access barriers to healthcare for older refugees. According to them, when medication and tests had to be paid out of pocket in total or in part, families either borrowed large sums of money or, as stated by one of the social workers, “in many cases families neglected them and prioritised children’s health and needs.” Familial neglect was explained as resulting from financial pressures as well as cultural values and stigma which prevent older women especially from going to clinics on their own and older men from seeking mental health support, even when it is highly recommended by the health and social care providers.
On the level of the individual, study participants explained that ageism not only stigmatised older refugees, but led to internalisation in that older Syrian refugees displayed self-directed, age-based discrimination. In such situations, ageism was perceived to be strongly related to status loss given that traditionally older people were valued and respected in Syrian society. Attitudes towards them changed since the war, causing related insecurities and hardship due to familial stress and the inability to make ends meet. Older refugees were seen as burden rather than contributors to the social household economy, and were consequently neglected as stated in the previous section. These views, in turn, were internalised by the older Syrian refugees who often thought of themselves as a burden on their families. One counsellor said, “One of my patients, in her late 60 s, sleeps on the kitchen floor next to the stove because her daughter and son-in-law were complaining about her snoring. She just wants to make herself invisible because she feels as a burden on them.” Similarly, a case manager explained,
A refugee in her early 60s used to work and live in her own tent. The latter got burnt down, she also had complications from diabetes, blood pressure and a rat bite [her tent had neither door nor heating]. She then had to stop working and move in with her relatives. Since then she has been severely depressed feeling she is a burden. She also has to clean their house to be able to stay with them which is impacting on her physical wellbeing.
Self-directed ageism also manifested in the perception older refugees have of their own self-worth. This was especially noteworthy amongst men who, according to the participants, perceive themselves as having higher status than women, and having the financial and decision-making power. One counsellor explained,
Older [male] refugees get to Lebanon already vulnerable because they lost their status when they retired. In addition, their spouses have no sexual interest in them anymore and baby-talk them. The final knock-out was the war and becoming a refugee which completely broke their self-image. When working with them we see how hard it is to break the ageist attitude they have about themselves.
Furthermore, study participants considered that attitudinal barriers to healthcare access were mainly rooted in self-directed, age-based discrimination. Practitioners noted that older refugees often neglected their own health out of fear of becoming a burden on their families. They reported that older refugees would not stick to the prescribed treatment so they could save or stretch medication, or they would not return to the clinics for follow-up treatment or for refill of their medication. One of the psychologists reported that many of the older refugees she sees tell her, “Forget about me, treat the young. It’s too late for me, but the young have a future ahead of them.” In the interview, the psychologist interpreted such a stance as self-directed, age-based discrimination “whereby older refugees consider themselves not worthy to receive medical treatment and social support given their age.”
Recommendations from participants for a more effective humanitarian response for older refugees
In interviews, study participants were invited to reflect upon what kinds of change would be necessary, and feasible, to address the health and social needs of older Syrian refugees under these challenging circumstances. They highlighted four key areas including (a) the importance of prioritising older refugees in the aid response, (b) training staff, (c) adopting a holistic approach to care, and (d) adopting participatory approaches to intervention and policy developments that take into account the complex and special needs of older refugees as well as their capabilities.
Prioritising older refugees in the aid response
Health providers explained it would be crucial to prioritise older refugees as part of the humanitarian response. According to the respondents, the lack of prioritisation of older refugees also manifests in excluding them from data collection. One of the social workers told us, “The surveys conducted by NGOs do not include older refugees. But when I see an older refugee in a tent or a house I am surveying, I would include him/her in the survey. I don’t know if other service providers do the same.” Study participants related the marginalisation and exclusion of older refugees from the aid response and needs assessments to ageism manifesting in both humanitarian and Lebanese policy making. One nurse predicted, “Older refugees will be neglected as long as there are no effective policies on ageing in Lebanon and there is no infrastructure to support older adults in general.”
Training of aid workers
It was suggested that this discriminatory situation could be mitigated to some extent by training staff in more effective medical, psychological and social responses when dealing with older refugees and their particular needs. A psychologist who regularly lobbied for such training said, “I always report to UNHCR that more resources and trainings are needed for and about older refugees.” Unfortunately, she explained, her requests are largely ignored. Instead, she and her colleagues are offered alternative training in “working with people suffering from gender-based violence and other vulnerable groups but we were never trained on how to best help older adults.”
Training participants thought would be needed focused on learning how to read older refugees’ body language, detect their mental health problems and diagnose physical symptoms that might manifest differently compared to other age groups. One GP exemplified this by referring to sepsis, saying that the illness “presents without fever among older adults, who also have different malnutrition and appendicitis symptoms.” Most study participants requested holistic training to better understand the complex and intertwined physical, mental and social needs older refugees presented with. One GP explained, “If I was offered appropriate training about older refugees I would be able to look holistically at their needs spearing them many referrals to specialists.”
Adopting an holistic approach to care
All respondents insisted on the importance of prioritising mental health support and improving the living conditions and social connectedness of older refugees to achieve better physical health outcomes. However, it was explained that such holistic approaches to care were largely under-financed in the humanitarian aid sector. A social worker stated that resources are mainly spent on “physical health, medication and tests when it comes to older adults” while their social needs were side-lined, leading to loneliness and related mental health problems. As the provision of holistic care was neither supported by the humanitarian nor the governmental sectors, older Syrian refugees were dependent on the good will of their families. A nurse criticised this situation saying, “Older adults should not only be the responsibility of the family especially that often we witness neglect on the part of the family. The government and UN should take them in charge by providing safe and healthy shelter, covering their medical expenses and offering activities to integrate them in the society.”
Adopting a participatory approach to aid
Health providers emphasised the importance of adopting participatory approaches that involve older Syrian refugees as active agents in needs assessment, care and social inclusion. They explained that this would require a radical shift in current perception and practice as older refugees are generally perceived to be vulnerable individuals, fully dependent on aid and assistance and therefore unable to contribute to society in any meaningful way. This, a mental health nurse said, was a misconception and went on to elaborate, “first of all, we need to do an assessment and ask older refugees themselves about their needs so that we do not offer them inappropriate services.” A case manager went even further when saying, “We should invest in the experiences and skills of older refugees. This will be of great benefit to future generations. Sadly, the most complicated cases with the least success among the four categories of PSWN are the ones with older refugees.”
In order to reverse this situation and provide more effective care to older refugees, the case manager considered that,
Aid agencies should involve older refugees in the response as they are the ones who know what they need more than we do. They should also be encouraged to play bigger roles in their communities as they are the holders of heritage and traditions and of so many invaluable crafts and skills. This will not only benefit the community but older refugees themselves reflecting positively on their mental and physical wellbeing.
Other participants cautioned that while demands for more direct participation and contribution of older refugees to their healing was important, it could not be achieved as long as the humanitarian response refused to prioritise older refugees and failed to cater to their needs in a holistic manner.