Challenges during the perinatal period can lead to maternal distress, negatively affecting mother-infant interaction. This study aims to retrospectively explore the experiences and needs regarding professional support of mothers with difficulties in mother-infant interaction prior to their admission to an infant mental health day clinic. In-depth semi-structured interviews were conducted with 13 mothers who had accessed an infant mental health day clinic because of persistent severe infant regulatory problems impairing the wellbeing of the infant and the family. Data were transcribed and analyzed using the Qualitative Analysis Guide of Leuven (QUAGOL). Three themes were identified: ‘experience of pregnancy, birth, and parenthood’; ‘difficult care paths’; and ‘needs and their fulfillment’. The first theme consisted of three subthemes: (1) ‘reality does not meet expectations’, (2) ‘resilience under pressure’, and (3) ‘despair’. Mothers experienced negative feelings that were in contradiction to the expected positive emotions associated with childbirth and motherhood. Resilience-related problems affected the mother-child relationship, and infants’ regulatory capacities. Determined to find solutions, different healthcare providers were consulted. Mothers’ search for help was complex and communication between healthcare providers was limited because of a fragmented care provision. This hindered the continuity of care and appropriate referrals. Another pitfall was the lack of a broader approach, with the emphasis on the medical aspects without attention to the mother-child dyad. An integrated care pathway focusing on the early detection of resilience-related problems and sufficient social support can be crucial in the prevention and early detection of perinatal and infant mental health problems. Becoming a mother is a unique life event that can be overwhelming . ImportaPerinatal mental health problems occurring during pregnancy or in the first year following birth, affect approximately 20% of women ,9, thus The developing capacity of the child from birth to 5 years old to form close and secure adult and peer relationships; to experience, manage, and express a full range of emotions; and to explore the environment and learn—all in the context of family, community, and culture”  […] and then I looked it up on the internet, I contacted them and that’s how I got an intake”—M2Moreover, admission to the IMH facility came with a preexisting stigma, both in mothers as well as in healthcare providers. “It was very threatening in the beginning. It’s baby psychiatry, that’s a big word. In our environment, everyone said: ‘a baby to a psychiatrist? What will they do? Chat with it?’.”—M3Mothers also mentioned several pitfalls regarding the accessibility of mental healthcare services. A lack of connection between them and the healthcare provider, long waiting lists, and high costs associated with mental healthcare were discouraging to seek help.“And then I said, with tears in my eyes: ‘here it ends, this doesn’t work. I cannot afford that (cfr. psychotherapy)’.”—M1Several factors challenged the mothers’ resilience. “The lack of sleep, that was the biggest trigger for me. That completely undermined my resilience.”—M5These factors, related to the experience of pregnancy, childbirth, and the postnatal period, led to negative emotions, contradicting the expected positive emotions associated with pregnancy and childbirth.Almost all mothers felt the need to be heard, without judgment. “I screamed for help but no one, no one heard me, no one really listened.”—M12A supportive social network was important for the fulfillment of this need. The partner was the most important support figure. The absence of a partner, an unstable relationship, a lack of communication, or a lack of support regarding existing problems with the mother or the child, challenged the mothers’ resilience. “I felt completely, well, very little supported by my partner. Uhm, we’ve almost stopped talking to each other.”—M13Family members, especially their mother and friends, gave emotional and practical support. However, the well-intended but contradicting advice given by this network could also be perceived as disturbing and frustrating. Another support source was the work environment of the mother. A supportive working environment was characterized by flexibility and acceptance, for example, for taking parental leave. The experience of the contrary, receiving little or no support, led to feelings of loneliness and isolation.“I really felt completely isolated from the world, I felt completely misunderstood.”—M6Another high valued form of support was peer support. The possibility to discuss their experiences with peers had a positive impact. Contrary to their network, peers were more understanding and acknowledged their feelings. Some of the participants are still in contact with the parents they met through the IMH facility.“Yes, I have noticed that I had a lot of support just by chatting with other moms, who also experienced similar situations (…)”—M11In addition to the need for support, mothers indicated that they had to learn to trust themselves and their competence again. Mothers described feeling disconnected. They no longer relied on themselves nor their gut feeling. As a result, they were unable to connect with their child, both physically and emotionally, causing a disturbed mother-child relationship. This disturbance in the relationship was also reflected in the child’s behavior, for instance, by looking away from the mother.“When I was admitted (cfr. to a crisis psychiatric ward), I really had the feeling ‘I don’t want that child, I really don’t. I, I would prefer to give him up for adoption (…)’”—M10Getting confirmation from their environment and being encouraged by healthcare providers, was very important in this context. A prescribed sick leave by the IMH facility gave mothers the feeling of being allowed to rest. The prescribed rest and the mindfulness exercises helped them to reconnect with their intuition. Interventions to reconnect and rediscover the bond with their infant were also experienced as helpful.“That [crf. baby dancing] was one of the few moments that we really enjoyed each other. (…) Because it was so intense to feel that connection with him. I really needed that to feel like ‘oh, it’s there. It is just very difficult between us for a while, but it is there’.”—M6The individual psychological sessions with a counselor at the IMH facility were also perceived as supportive. “We just got a lot of information at the infant mental health facility, that was something to hold on to and an explanation for certain situations”—M1During their admission to the IMH facility, in a few cases, the resilience of the mother was under pressure to such an extent that inpatient admission of the mother to a psychiatric hospital was necessary, to guarantee the safety of both the mother and her child. Although the mothers initially expressed resistance, later they felt relieved. By stepping out of the family environment and allowing themselves to rest, mothers were given the chance to get out of the negative spiral.“Yes, the negative spiral of ‘I’m a bad mother … and there is no reason for me to carry on like this’. That really was my attitude.”—M10After discharge, mothers felt the need for maintaining professional support in case of questions or concerns.“I have always had the feeling that the infant mental health facility provided a safety net after our discharge.”—M6As mentioned above, mothers felt the need to be heard. However, mothers felt that some healthcare providers took a paternalistic approach, making them not feel taken seriously. Mothers felt frustrated and, in some cases, they stopped the care process. “But [sighs] most doctors always stay above you (…).”—M5The absence of professional support caused despair in mothers. A sense of failure as a mother, as a partner, and as an employee, emphasized this feeling of despair affecting the mother’s self-image negatively. Mothers felt guilty and blamed themselves for the situation they were in.“I felt like the worst mother ever because what kind of mother can’t comfort her own child?” —M9Some mothers lost their selves in their work and some cases, in narcotics, such as sleep medication.“Uhm, but I lost myself in my job…” —M6Nonetheless, mothers reported a determination to find a cause and a solution for their infant’s excessive crying, sleeping, and/or feeding problems. Therefore, mothers visited many different healthcare providers during the postpartum period. The general practitioner often played a passive role, despite the fact that he or she sometimes acted as a confidential counselor for the mother. The postpartum care by the midwife was rather short-term and the problems often arose after midwifery care was over (approximately 6 to 12 weeks postpartum). All mothers consulted a pediatrician who typically tried to exclude physical problems in the child . If this did not improve the situation, no alternatives were left. The lack of referral to specialized mental healthcare after all other medical approaches failed left mothers with a feeling of not being heard nor understood.I only encountered a lack of understanding in the medical world and that frustrates me the most …”“—M11 This study aimed to retrospectively explore the experiences and needs of mothers regarding professional support prior to their admission to an infant mental health day clinic because of persistent severe infant regulatory problems. Three major themes were identified: ‘experience of pregnancy, birth, and parenthood’, ‘difficult care paths’, and ‘needs and their fulfillment’.The transition into parenthood is a complex interaction of stressors and resources, in which finding a balance between these two is crucial. The extent to which parents are capable of finding this balance is captured in the literature as resilience. Resilience in pregnancy and after birth is multi-factorial and influenced by individual, socio-cultural, and environmental factors . Van HaeDue to challenging factors related to pregnancy, childbirth, or the postpartum period, women experienced negative feelings contradicting the anticipated feelings of happiness. The majority of the mothers had expectations influenced by their social environment and the society in general, that were not met. This can be the result of a knowledge deficit as was shown in a Canadian study with first-time parents, in which only 44% reported the feeling of being adequately prepared for parenthood . SimilarIn Belgium, the perinatal healthcare system is characterized by a variety of professions  organized in hospitals as well as in private care which provides a multidisciplinary healthcare setting. However, the fragmented care provision makes access to services complex for future parents and complicates communication and referral between healthcare providers ,33. In oHowever, the perinatal period provides a window of opportunity in which healthcare providers may screen for resilience-related problems and detect a decline in resilience attributes, ideally starting from prenatal consultations ,38. In lThis study provides an in-depth understanding from the perspective of mothers on the factors that challenge the mother-child relationship and perinatal resilience. The approach is bottom-up, providing direct insights from the mothers, and provides greater insight into the lived experiences of women compared to quantitative designs. Despite these strengths, some limitations need to be considered. First, recruitment of participants took place in only one infant mental health facility in Belgium, generalization of the results to other settings, therefore, warrants caution. Second, we only included mothers. Therefore, the perspective of partners is missing which is relevant for a broader understanding of the supportive environment of women. Third, the sample consists mainly of Caucasian, highly educated, employed women who were living with their partners. It is therefore important that further research is initiated to examine the experiences and needs of mothers and their partners from more diverse backgrounds. Fourth, the main focus of the interviews was on the experiences and needs regarding professional support prior to admission to an IMH facility, with the consequence that healthcare during pregnancy and the experience of childbirth was not systematically questioned. Future research can include the family triad as well as the experiences during pregnancy and birth to obtain a more holistic perspective.The mothers in our sample struggled to find a balance between the stressors they experienced during the perinatal period and their resources, putting their perinatal resilience under pressure. Mothers experienced a sense of failure, a disconnection with themselves and their infant, and did not believe in their abilities to cope with motherhood. A lack of social support from their (in)formal network made women feel isolated. The negative feelings women experienced were in contradiction to the expected positive emotions associated with childbirth and motherhood. This negatively affected the mother-child relationship, and infants’ regulatory capacities. Determined to find solutions for the latter, different healthcare providers were consulted. Mothers’ search for help, however, was complex and communication between healthcare providers was limited because of a fragmented care provision. This hindered the continuity of care and appropriate referrals. Another pitfall was the lack of a holistic approach, with the emphasis on the medical aspects without attention to the mother-child dyad. From this study, the following can be learned: (1) mental health needs to be a component of an integrated care pathway focusing on early detection of resilience-related problems; (2) social support should be addressed in perinatal care as a key attribute to support maternal resilience; and (3) integrated care should be provided with the family triad as a focus, up to the child’s age of two. Last, societal sensibilization regarding the importance of perinatal mental health and how to support new parents should be a part of public health campaigns.


People living with HIV (PLHIV) who use illicit drugs (other than or in addition to cannabis) are living longer due to antiretroviral therapy (ART). Older PLHIV who use drugs have an increased risk for comorbidities, and managing multiple health conditions is a growing concern among this population. However, in‐depth understandings of the lived realities and complexities of living with HIV alongside comorbidities among older PLHIV who use drugs remain limited. We sought to explore how older PLHIV who use drugs manage their comorbid conditions in a setting with universal ART access.Between January 2019 and March 2020, semi‐structured, in‐depth interviews were conducted in Vancouver, Canada with 42 older PLHIV who use drugs and were living with at least one comorbidity. All participants were currently on ART, and had initiated treatment at least 2 years prior to the interviews. Data were analysed using inductive and deductive approaches.Several themes were identified through this analysis. First, comorbidities were perceived as more urgent health concerns and prioritized over HIV. Second, stigma and discrimination hindered access to care for comorbidities. Third, the concurrent management of HIV and comorbidities was often challenging due to unmanaged or poorly managed comorbidities. Fourth, the potential impact of ART on the development of comorbidities was a source of concern and frustration. Finally, integrated treatment approaches facilitated engagement with HIV and comorbidities care.Our findings underscore the need for HIV care to shift from a primary focus on managing HIV to an integrated, patient‐centred approach that addresses both HIV and non‐HIV‐related health needs, as well as an equitable and non‐judgemental delivery of such care for an ageing population of PLHIV who use drugs. Since tPLHIV are at elevated risk for a range of chronic diseases, including type 2 diabetes, non‐AIDS defining cancers and renal, pulmonary and cardiovascular diseases , 12, 13.However, in‐depth understandings of the lived realities and complexities of living with comorbidities among PLHIV who use drugs remain limited, especially among the ageing population. No literature to date has examined how older PLHIV who use drugs manage their multiple health conditions and overlapping needs within the context of social‐structural inequalities. We undertook this study to explore the experiences of managing HIV alongside comorbidities among older PLHIV who use drugs and how these are shaped by social‐structural forces operating within the risk environment. Greater understanding of how older PLHIV who use drugs manage their HIV and comorbidities will be essential to informing efforts to optimize care strategies and improve the health and quality of life of this population.2We draw upon 42 semi‐structured, qualitative interviews conducted with older PLHIV who use drugs (other than or in addition to cannabis) and were living with at least one comorbidity ; and diagnosed with at least one comorbidity. Participants were recruited using two approaches to enhance the diversity of the study sample. First, participants were recruited through outreach at the Dr. Peter Centre, an integrated HIV care facility serving PLHIV who use drugs in Vancouver's West End neighbourhood through its low‐barrier day health program and specialized nursing care residence. A recruitment booth was set up at the facility to provide information about the study and centre clients were invited to participate. Those who expressed interest in participating were then screened for eligibility and, if eligible, scheduled an interview. Second, participants were recruited from a cohort of individuals enrolled in the AIDS Care Cohort to evaluate Exposure to Survival Services (ACCESS), a community‐recruited open prospective cohort study of PLHIV who use drugs. Participants were eligible for ACCESS if they were 18 years of age or older, lived in Greater Vancouver and used illicit drugs other than cannabis in the previous month . ACCESS 2.2Interviews were conducted by two masters‐qualified and experienced qualitative research coordinators (KLC and CN) in a private room at the Dr. Peter Centre or BCCSU field office. Prior to each interview, interviewers provided participants with an overview of the study, answered any questions and obtained written informed consent. A survey was used to collect demographic information (e.g. drug use patterns and HIV treatment history) and an interview guide was used to facilitate discussion regarding how participants managed their HIV and comorbidities. The interview guide was developed based on a review of the relevant literature and by drawing on the research team members’ expertise conducting qualitative research with PLHIV who use drugs. Interviews lasted approximately 60 min and were audiorecorded. Participants received an honorarium ($30 CAD) as compensation for their time. Interviews were conducted between January 2019 and March 2020. Interviews were transcribed by a professional transcription service and reviewed for accuracy by the interviewers. An online random name generator was used to give study participants pseudonyms.2.3a priori themes derived from the interview guide, literature review, expertise of the research team and preliminary themes emerging from the initial interviews . The data were then coded by two members of the research team. During data collection and coding, the research team met regularly to discuss new themes that emerged and refined the coding framework to fully account for participant experiences. To interpret our themes, we then drew upon the Risk Environment Framework. Through comparison to narrative data, we sought to characterize how the participants’ experiences of managing HIV and comorbidities were shaped by contextual forces. Of particular interest were how features of the risk environment shaped access to and engagement with treatment and care for their multiple health conditions.Interview transcripts were imported into NVivo qualitative analysis software to facilitate coding and thematic extraction using both inductive and deductive methods. Following an inductive approach, data analysis started during data collection for emergent themes to be incorporated into subsequent data collection. The research team developed a preliminary coding framework after approximately 25 interviews. Codes were developed based on deductive 3Five themes emerged from data analysis. First, comorbidities were prioritized over HIV. Second, stigma and discrimination hindered access to comorbidities care. Third, concurrent management of HIV and comorbidities was often challenging to juggle. Fourth, the potential impact of ART on the development of comorbidities was a source of concern and frustration. Finally, integrated treatment approaches facilitated engagement with HIV and comorbidities care.3.1Dan:For the first 15 years, I had zero T cells, and now my helper cells are around 650 and I have been undetectable for the last 15 years.Interviewer:What was going on before that when you didn't have undetectable viral loads?Dan:It [HIV treatment] wasn't working out much. When I was prescribed AZT, I had chronic pill fatigue and was tired of taking meds so I just stopped.The majority of participants explained that HIV was no longer their most pressing health concern, as many had been diagnosed with HIV in the 1990s or early 2000s and had grown to view it as a manageable chronic disease. These participants reported that, while managing HIV was “obviously” important, their HIV‐related health needs were under control when they were adherent to ART. Most of our participants had initiated treatment during the early era of ART – characterized by pill burden and side effects (e.g. nausea and fatigue) often resulting in suboptimal treatment adherence and in turn poor outcomes . In contInterviewer:What is your biggest health concern or priority for you right now?Lindy:My lungs are what really, really scares me. […] This winter, it was so hard to breathe. […] That's the one thing that I'm more concerned about. I'm not really concerned about anything else. I get concerned about my liver and kidneys and whatever, right, because I know they're all going to go sooner or later. But I know it's my lungs right now that are in really bad shape. I mean when they tell you you have to see a specialist, and they can't figure what's going on, that is scary. That's really scary when I can't walk that far without going [panting for breath].Participants explained how comorbidities often took priority over HIV, as management of these conditions was more challenging. Given their medical complexity and older age, participants described lack of access to adequate treatment for their comorbidities. For example, for “Lindy”, a 57‐year‐old Indigenous woman living with COPD, her lung health took priority over other health issues. Despite experiencing significant difficulties breathing and engaging in daily activities, she had not been able to receive a diagnosis and therefore appropriate treatment for her condition:Well, I worry more about my dialysis than I worry about the HIV. The HIV I'm not going to die from. I'm going to die from dialysis or maybe a stroke. When I come from dialysis, I feel like I'm having multiple strokes. […] I'm worried about dying from dialysis because they're not going to give me a kidney transplant. I'm too old and I got too many things wrong with me.For, “Jamie”, a 55‐year‐old white man with a kidney failure, concerns about his current dialysis treatment were paramount as he frequently experienced severe post‐dialysis symptoms. However, his older age and multimorbidity hindered his ability to access a kidney transplant, leaving him with no other option but to continue dialysis:3.2I just feel like the fact that I'm in active addiction makes it that he's [physician] less real with me. […] I just had a big surgery on my back for having a big boil. There was a big opening on my back basically and like the bandages needed to be changed, like he just couldn't be bothered, like it was just like, “here's your increase on your methadone, can I do anything else for you?” I'm like, “well, my back.” “The nurses can help you with that and this is all you need from me?” And I'm like, “I guess so.” And he just like sluffed me off so quick, yeah, I don't like him.Participants expressed that even as they had gained access to HIV care through HIV‐specific providers and facilities, stigma and discrimination in health care encounters impeded their access to comorbidities care. Participants reported living with a wide range of non‐HIV health conditions, with the most common being chronic pain, hepatitis C, COPD, cardiovascular disease, mental illness and substance use disorder. Some participants described experiencing anti‐drug stigma from health care providers, even when receiving treatment for substance use disorders, and how this in turn led to discrimination in care and hindered their access to treatment for comorbidities. For example, “Jeffrey”, a 51‐year‐old white man on methadone maintenance treatment for opioid use disorder described receiving inadequate post‐surgery back care by his physician as a result of discrimination based on drug use:They [physicians] automatically figure that you're either seeking drugs, you know, for something that isn't there. That's my interpretation. It's just it's difficult to get something for pain if you're an addict.Among many participants, management of chronic pain owing to nerve pain or underlying conditions (e.g. arthritis and osteoporosis) was identified as a major health concern. However, participants described experiencing discrimination on the basis of their drug use, which hindered access to effective treatment. For example, “Joe”, a 60‐year‐old white man, described:The doctors being so difficult in trying to prescribe you. Right away they look at you as an addict, so that's the first thing they talk about – let's talk about putting down your meds a little bit. That's the first thing they'll talk about. […] I look First Nation too, that plays a role in it immediately.Some Indigenous participants recounted how their health care experiences were tied to their interlocking social positions. For example, these participants commonly described how pervasive discrimination on the basis of drug use, race and Indigeneity by providers precluded them from accessing effective pain treatment. They explained how physicians often denied them access to opioids for pain management as a result of false beliefs and biases against Indigenous people who use drugs. As “Mark”, a 55‐year‐old Indigenous man, described:3.3It's a burden, it's a nuisance. I wish I didn't have these other [non‐HIV] ailments”. Most participants described how they were generally well engaged in HIV care, keeping their routine medical appointments to monitor their CD4 counts and viral loads, among other clinical outcomes, and adhering to their ART regimens. However, participant narratives revealed how comorbidities were often unmanaged or poorly managed, and how symptoms from comorbidities or side effects from treatment for these conditions could adversely affect their HIV management. For example, Jeffrey recounted how treatment disruption for his opioid use disorder led to poor ART adherence. After being involuntarily cut off from methadone maintenance treatment, he stopped going to the Dr. Peter Centre, where he took his HIV medications:Interviewer:When you described going off of the meds [ARTs] for a couple months, what was going on for you at that time?Jeffrey:I'm not sure exactly what was going on at the time. It's when I got off, when I got kicked off the methadone, I kind of […] stopped coming here [Dr. Peter Centre] for a while. I take my meds here […] so if I'm not coming here, then I wasn't taking them.Participant accounts elucidated the challenges of juggling the management of HIV with comorbidities. Participants across the sample reported feeling overwhelmed and burdened by the management of multiple health conditions, as Lisa illustrated: “Jeffrey:I've missed lots of appointments, yeah. It's just, my concentration is somewhere else, I guess.Interviewer:Where is your concentration?Jeffrey:Well, it's in active addiction.Jeffrey also described the difficulties of keeping his appointments with unmanaged substance use disorder:The Benzos have a lot to do with my fatigue. And sometimes I do miss appointments cause I'm tired. Or I just don't want to get up.Lisa explained how taking benzodiazepines to manage an anxiety disorder induced fatigue and sometimes limited her ability to keep her appointments:These challenges experienced by participants with regard to managing HIV alongside comorbidities suggest lack of coordination in their care. Participant narratives highlighted how they not only live with the burden of their illnesses, but also the burden of managing their care for multiple, concurrent conditions.3.4I wonder after like 25 years of taking an HIV med, is it hard on my liver and kidney? Cause obviously the drug has some toxin. […] I don't think the HIV will kill me, I think more likely other issues like maybe kidney failure or liver failure or heart, or maybe heart attack.For some participants, the potential impact of ART on the development of comorbidities was a source of concern. While most participants described how they continued to take ART, several participants expressed apprehensions about the drugs’ cumulative effects on various organs, including the kidney, liver and heart, and resulting morbidity and mortality. As “Larry”, a 68‐year‐old Asian man described:They [physicians] want to start me on a new treatment [for HIV] to see if my COPD can go away with that new med, but I'm refusing to take it because it says something to do with damaging your liver, so I thought why should I take a drug that is going to damage the liver when my liver is fine right now, so just weighing out options. That's where I'm at, at the moment.For Mark, concerns over the possible contribution of ART to the development of comorbidities made him reluctant to make any changes to his current ART regimen. He lives with COPD and explained the dilemma of having to weigh the option of an alternative HIV treatment, which may improve his immune system and lung function, but bring with it a new risk for liver damage:I've been going on like this for decades and I'm at a point now, I want to continue fighting to survive health‐wise, and if HIV meds are helping, wonderful, but if they're going to do damage like I said, then I don't want to pursue it, I'll just let the virus take its toll.Mark later discussed how he would not take ART if it were to increase his risk of developing new comorbidities and cause more harm:The other health conditions like the restless leg syndrome and the nerve damage in my legs and feet are from one of the other cocktails that I was on. […] One of the side effects from another HIV cocktail that I was on. I have to take Gabapentin every day. So, yeah, my legs still hurt but they don't twitch as much as they used to. I spent nine years in an electric wheelchair. Now I walk.For some participants, concerns over the impact of ART on comorbidities were framed by past experiences with early, toxic ART regimens. “Chris”, a 50‐year‐old white man, described how his previous ART regimen led to restless leg syndrome and nerve damage in his legs and feet, which prevented him from walking. After switching to a new regimen, he has been able to walk but still takes gabapentin to manage his nerve pain:I got anemia and my doctor said, 'Oh, no, it's HIV‐related.' It wasn't HIV. It was a viral anemia. He says, 'But it doesn't matter, you still have to go on viral medications. You have to go on the HIV medications.' I'm, like, 'Yeah, okay. What the hell, I don't know what I'm doing.' And then my immune system crashed. Everything went nuts and I almost died from taking too much medication. The AZT, whatever it was, HIV medication had a bad reaction and I came out delusional. […] And then it was later discovered […] that I had PML, it was a brain infection that nearly killed me.For “Paul”, a 60‐year‐old white man, trepidations about how ART might lead to comorbidities were rooted in previous experiences with toxic ART regimen alongside negative health care encounters. Paul recounted how he was unwillingly put on AZT (zidovudine) by his physician, which he believed led to a compromised immune system, and ultimately, development of progressive multifocal leukoencephalopathy (PML), a severe viral infection of the brain:3.5It [comprehensive primary care clinic] is a good place, you know. They're really good there. You know how you go to the doctor. You can only see him one symptom at a time. Well, with us, it's a lot different because a lot of things happen to us, right. And so, they don't care about that. You know, you maybe go in with multiple different things and they'll fix you up. […] You know, nutrition, you know, you can go there and they do your blood work. They have counselors there if you need them. Just everything in general.Many participants expressed the importance of care based on integrated approaches that address the multitude of health and psychosocial issues that they experience. Several received care at a local primary care clinic for PLHIV and explained how their various needs were met through the clinic's integrated services model that provided holistic care, as “Robert”, a 62‐year‐old white man, described:They help me, the staff [at Dr. Peter Centre], to remind me because I have so many appointments. The eye doctor, hearing aids, heart. […] My family physician, my HIV doctor. So, I had a lot of appointments there for a while. Five days a week. Nonstop all day. So, I made sure I kept them.Participants described how care coordination and co‐location of services facilitated greater ease and confidence in engaging in the concurrent management of their HIV and comorbidities. For example, care coordination allowed participants to keep their medical appointments. Jamie, a resident of the Dr. Peter Centre, explained how care coordination, including in‐person reminders by the centre's nurses, facilitated his ability to keep his HIV and non‐HIV‐related clinic appointments:Interviewer:Do you find it was difficult to manage all of those medications?Jim:No. No. No, because we made it to where I get it every day. I had daily dispensed methadone at the time, so we had everything there in one shot. So I'd go there in the morning and take it and that was it.Participants whose ART was co‐administered with medication for comorbidities, such as methadone, described how the daily, coordinated dispensing and witnessed ingestion, typically at pharmacies or the Dr. Peter Centre, encouraged their treatment adherence. “Jim”, a 60‐year‐old white man who reported being cured of hepatitis C, recounted how integrated approach to dispensation of his medications, including hepatitis C treatments, ART and methadone, made the management of multiple comorbidities simple:I went through depression. They [Dr. Peter Centre] would assist me in counselling and whatever is out in the community that I can access. […] They got me through a lot of my grief and there is a lot of support here. […] I go through like homelessness, they help me with letters and whatever information that they have out there that they're aware of.Finally, clients at the Dr. Peter Centre described receiving care that was responsive to features of the risk environment (e.g. housing insecurity and food insecurity) through the centre's integrated approach to health and social services. For example, Jeffrey described receiving counselling as well as support around securing housing to address the underlying causes of his depression:Participants described feeling supported and experiencing improved wellbeing when they received support that addressed the full spectrum of their presenting needs.4Our study contributes to the nascent body of literature on comorbidities among an ageing population of PLHIV. Specifically, this study adds the perspectives of older PLHIV who use drugs, a growing but understudied population disproportionately affected by comorbidities, and their experiences with health management. Many participants prioritized comorbidities over HIV as access to effective treatment was more difficult for these conditions. Our study also revealed the everyday challenges of managing HIV alongside comorbidities, juggling multiple health needs. While motivation to engage in HIV treatment was generally high, for some participants, the potential impact of ART on the development of comorbidities was a source of concern and frustration. Participant narratives demonstrated the critical need for integrated care to support the concurrent management of HIV and comorbidities.Perhaps unsurprisingly, given advances in ART and its universal coverage in our setting, participants in our study prioritized comorbidities over HIV. In line with our finding, previous work from the United States has identified comorbidities as a source of concern among PLHIV, in some cases overshadowing HIV‐related concerns . MoreoveOur research illustrates the complexity of concurrently managing HIV and comorbidities for older PLHIV who use drugs. In line with previous research reporting that PLHIV worry about the potential adverse effects of ART , 33, parIntegrated care has been increasingly recognized in recent years as a necessary approach to organizing care for various populations with complex care needs, including the general older adult population and PLHIV , 35. We This study has limitations. First, interviews were limited to English‐speaking individuals. Thus, the experiences of individuals who are particularly marginalized in mainstream systems of care, such as new immigrants and refugees, may not have been captured. Second, many participants had been diagnosed with HIV in the 1990s or early 2000s, and thus have experiences with older HIV treatment regimens. Therefore, their experiences may not be reflective of individuals who were diagnosed more recently. Finally, most participants had long‐term HIV treatment histories as our study was conducted in a setting with longstanding universal coverage of ART and other treatment supports (e.g. directly observed therapy) for PLHIV. Research conducted in settings without these supports may reveal other challenges to managing HIV alongside comorbidities.5The current study advances understanding of challenges encountered by older PLHIV who use drugs and how they manage their comorbidities. Our findings underscore the need for HIV care to shift from a primary focus on managing HIV to providing integrated, patient‐centred care that addresses both HIV and non‐HIV‐related needs as well as an equitable and non‐judgemental delivery of such care for older PLHIV who use drugs.This work is supported by the National Institutes of Health [R01DA043408]. KLC is supported by a Mitacs Accelerate Fellowship. WS is supported by an Michael Smith Foundation for Health Research (MSFHR) Scholar Award. AI is supported by a Mitacs Elevate Postdoctoral Fellowship. RM is supported by an MSFHR Scholar Award and Canadian Institutes of Health Research (CIHR) New Investigator Award.The authors have no competing interests to declare that are relevant to the content of this article.KLC, CN and RM developed the study protocol. KLC and CN conducted the interviews. KLC, CN and RM developed the coding framework. KLC and CN coded the data. KLC wrote the original draft and revised it following feedback from CN, WS, AI and RM. All authors read and approved the final manuscript.


Digital interventions may provide low-threshold support for smoking cessation (SC) and alcohol moderation (AM) to the growing population of cancer survivors. The objective was to explore preconditions of successful AM and SC digital interventions for cancer survivors.n = 240), a qualitative study consisting of four focus groups (n = 15) and semi-structured interviews with Dutch cancer survivors (n = 8). To help interpretation of our results we interviewed experts in the field of eHealth and cancer survivors (n = 6) and we organized an expert meeting (n = 7). Qualitative data were analysed using the Framework approach and were double-coded by two coders.Using a multi-method approach we conducted a survey , often because they deemed their alcohol use to be non-problematic. All current smokers in the survey had considered SC before. In focus groups and interviews it became clear that SC efforts did not always stem from their own willingness to quit smoking, but originated from a wish to please their social environment. Main themes to be addressed in digital SC and AM that emerged from the interviews and focus groups, centred on the different ways of identification as cancer survivors, need for autonomy, differential beliefs about SC and AM, and the importance of a positive, non-patronizing tone-of-voice. Several specific preferences for digital interventions were formulated, although some cancer survivors prefer no support or face-to-face contact.Survey results show the majority of drinkers had not previously considered AM (Cancer survivors are a diverse group with diverse preferences for AM and SC support. Digital AM and SC interventions for cancer survivors are perceived to be of value by some, especially when they incorporate a positive, non-judgemental and non-patronizing tone-of-voice, address concerns specifically relevant to cancer survivors, offer possibilities for personalization, and emphasize autonomy throughout. To encourage AM specifically, problem recognition and awareness of the health benefits of AM should be improved.The online version contains supplementary material available at 10.1186/s12889-021-11785-7. Alcohol and tobacco use are among the main behavioural risk factors for cancer , but alsP = .007) “If I would use a program, I would use the one for the general population, because for me much time has passed since [the diagnosis]. [ … ] the moment you get out of treatment or when you’re in the middle of it, there is still so much going on. You’re psychologically less stable, you experience many emotions, you have more physical complaints, apart from the withdrawal symptoms. [ … ] So I do think in that case it should be combined.” “[when asked about smoking] This is my buddy and it’s always there for me. To comfort me, or to keep me company, but it’s always there for me.” “It doesn’t bother me anymore and I don’t feel the need to quit anymore. There are not that many fun things in my life anymore. [ … ] It’s a very useless motion, it’s nothing, but to me it means a lot.” “I’m still in the middle of this whole cancer story, so how amazing is it that in the evening I get to sit back, grab a piece of cheese and a glass of port [alcoholic beverage]. Why would I want to moderate that. On the other hand, I do think that you should do anything you can to keep your body and condition in shape. [ … ] So I drink my glass of beer, but I also go to the gym. That’s how I keep life a little fun. [ … ].” “It needs to come from within yourself, if you don’t have the willpower, then it’s never going to work.” “I would grant it myself, but that moment might come and then it would need to come from within me. Or it might not.” “For me, it’s the approach. ‘Oh you managed to only have one [cigarette].’ Very much focused on your success, on your strength and not on judgement. Judgement is catastrophic for me, I will only smoke more.” “There was this website, saying that it’s my fault that I got cancer. [ … ] I read about oesophageal cancer and the combination of alcohol and smoking, and I don’t know what else they dragged into it. Then I looked up some other cancer types that are not related to it, and well, then that means the whole world is living wrongly. I messaged them: ‘I am a cancer patient and you are saying that it’s my fault that I have cancer, and I object to that.’” “We see a lot of working people, I feel like they appreciate getting to choose when they want to engage with treatment. On the other hand, the downside is that people really need self-discipline to use the program regularly.” “And then I say: ‘Your palpitations and stress might be related to the way you are handling it [by drinking].’ And that’s when he said: ‘Yes, I should handle it differently and play more tennis with someone.” [Concerning AM in particular, it should be taken into account that realizing the extent of their alcohol problems can be uncomfortable for a patient due to the stigma surrounding alcohol misuse and alcohol dependency.Interventions aimed at cancer survivors should take into account pronounced fatigue and mood problems, emphasize the benefits of AM and SC for treatment and recovery, and address different coping mechanisms to deal with increased anxiety. For AM specifically, problem recognition is an issue. Most people do not identify with the general image of problematic alcohol use, even if their alcohol use is well above recommended guidelines. Healthcare professionals are in a unique position to relate health outcomes or symptoms to smoking or alcohol use, thereby increasing awareness of their health consequences and create intrinsic motivation to change drinking behaviour:Experts also mentioned referral to the digital interventions by healthcare professionals as an important implementation route, because their advice is valued by cancer survivors. For healthcare professionals, it is a benefit to be able to offer tangible digital interventions as an extra tool while addressing AM or SC. However, one healthcare professional reported that the vast amount of available SC and AM apps and uncertainty about which would work (best) for the patient was a barrier for referral.We aimed to explore cancer survivors’ views on AM and SC, their preferences regarding digital support for AM and SC, and experts’ recommendations for successful AM and SC interventions for cancer survivors. This information was used to inform the development of SC and AM digital interventions , consideViews on AM differed from views on SC in several ways: awareness of the health consequences was higher for smoking than for alcohol drinking, smokers more often considered quitting smoking, and for AM more low-intensity support was preferred. Enjoyment and relaxation were associated with both smoking and drinking and provided a barrier for AM and SC. Intrinsic motivation was deemed essential for successful quit attempts.Majority of current smoking cancer survivors in the survey considered quitting, while most current drinkers did not consider moderation. This lack of interest in AM might be driven by low recognition of problematic alcohol use, alcohol use being more socially acceptable and the lack of awareness of the health benefits of AM or the association between alcohol and cancer. The way these different normative beliefs can influence the attitude towards AM or SC is predicted by the Theory of Planned Behaviour, which describes six constructs that influence intentions for behaviour change: behavioural beliefs, attitude toward the behaviour, normative beliefs, subjective norm, control beliefs and perceived behavioural control . FurtherHeightened awareness of their health can make cancer survivors more receptive to health messages of AM and SC , 22. ButThere was great variety in cancer survivors and their experiences, and this was reflected in different practical preferences for digital AM and SC support , as these directly influence their daily life and are thus perceived more relevant. This is predicted by the elaboration likelihood model which postulates that presentation of highly relevant information will encourage behaviour change .Our study showed that pivotal throughout all communication about AM and SC is recognizing and emphasizing the autonomy of the cancer survivor; one way to do so is by adopting a non-patronizing, non-condemning, positive tone-of-voice. Healthy lifestyle recommendations should be presented as advice and there should be explicit room for people to choose in what way to adhere to these guidelines . The importance of autonomy is in line with previous findings, where it is referred to as ‘personal control’ .The importance of intrinsic motivation for SC and AM was repeatedly noted, and failed quit attempts for SC were related to wanting to please others instead of being intrinsically motivated. Breast cancer survivors meeting physical activity guidelines actually reported higher intrinsic motivation and greater perceived autonomy support . Self-deCancer survivors in the current study did not know of ways to encourage intrinsic motivation, but several of their recommendations and preferences in reference to other topics were in line with what SDT refers to as an autonomously supportive context , which fosters development of human’s natural tendency to intrinsic motivation: positive performance feedback, absence of controlling remarks from their social network, freedom to determine one’s own goals (for AM or SC) and acknowledgement of their feelings . Acceptance and commitment therapy (ACT) could help encourage intrinsic motivation, as it focuses on participant’s values that guide them to the desired behaviour of AM or SC .Experts emphasized raising awareness on alcohol-related harm and alcohol problem recognition, taking into account pronounced fatigue and mood problems, and the need for engagement of healthcare professionals. They expressed concern about drop-out. The lack of discussion of SC with healthcare professionals and simultaneously the willingness to address it corroborates previous findings , 9. It sThis study used a variety of inductive methods to assess perspectives on support for SC and AM in cancer survivors: a survey, focus groups and interviews among cancer survivors, a meeting and interviews with experts in the field of eHealth, AM, SC and cancer survivors. These methods all complemented each other. By including eHealth experts and not only healthcare professionals, a perspective on the specific requirements for digital AM and SC interventions was provided. There was great variation in cancer types and treatment phases in participants. Limitations include that the recruitment of most participants took place through an online cancer patient platform. This selection might have influenced results on preferences for support, as participants probably enjoy spending time online and actively seek online information. Interviewed participants were, however, not all members of the online platform and at times provided a different point of view . The difficulties in recruiting participants for the qualitative part of the study might point to the intricacies of addressing AM and SC in cancer survivors and possibly the lack of awareness around the importance of these topics. The survey results cannot be generalized to all Dutch cancer survivors, as the survey was not a representative sample . It is possible that in a survey sample consisting of more excessive drinkers, more respondents would consider alcohol moderation, than was found in the current sample.The differences between perspectives on AM and perspectives on SC found in this study have implications for public health messages and approaches to AM and SC by healthcare professionals. Care should be taken to explain the relationship between alcohol, health and cancer. For SC, it could be promising to address the fear of quitting and replacement of the cigarette as a means for relaxation and keeping busy. Emphasizing that there does not have to be a relation between smoking or alcohol and the cause of someone’s cancer, and that AM and SC have other (short-term) benefits, could help avoid feelings of guilt. It is important to encourage healthcare professionals to address AM and SC with cancer survivors, and digital self-help interventions can be a useful tool to refer patients to.Future research should study how healthcare professionals could be encouraged to routinely address AM and SC in cancer survivors. Because of the fear of stigma and great variety in cancer types, different ways should be explored to efficiently tailor interventions to appeal to cancer survivors without stigmatizing them. More research should be conducted into ways to  motivate cancer survivors who are currently unwilling or ambivalent towards AM or SC.Our study findings shed light on how cancer patients view AM and SC support, and informs the development of digital interventions for AM and SC in cancer survivors. To encourage AM specifically, problem recognition and the awareness of the benefits of AM should be addressed, partly by involving healthcare professionals. Although some cancer survivors prefer no support or face-to-face contact, digital AM and SC interventions for cancer survivors are seen as a valuable solution. These interventions should incorporate a positive, non-judgemental and non-patronizing tone-of-voice, address concerns especially relevant to cancer survivors, offer possibilities for personalization and emphasize autonomy throughout. Care should be taken as to avoid stigmatization when tailoring interventions to cancer survivors.Additional file 1. Survey questions translated from Dutch.Additional file 2. Interview topic guide for cancer survivors.Additional file 3. Focus groups topic guide.Additional file 4. Interview topic guide for healthcare professionals and experts.Additional file 5. Table S5. Preferences for support in current users vs former users of alcohol and tobacco.


There is evidence that food industry actors try to shape science on nutrition and physical activity. But they are also involved in influencing the principles of scientific integrity. Our research objective was to study the extent of that involvement, with a case study of ILSI as a key actor in that space. We conducted a qualitative document analysis, triangulating data from an existing scoping review, publicly available information, internal industry documents, and existing freedom of information requests.Food companies have joined forces through ILSI to shape the development of scientific integrity principles. These activities started in 2007, in direct response to the growing criticism of the food industry’s funding of research. ILSI first built a niche literature on COI in food science and nutrition at the individual and study levels. Because the literature was scarce on that topic, these publications were used and cited in ILSI’s and others’ further work on COI, scientific integrity, and PPP, beyond the fields of nutrition and food science. In the past few years, ILSI started to shape the very principles of scientific integrity then and to propose that government agencies, professional associations, non-for-profits, and others, adopt these principles. In the process, ILSI built a reputation in the scientific integrity space. ILSI’s work on scientific integrity ignores the risks of accepting corporate funding and fails to provide guidelines to protect from these risks.The activities developed by ILSI on scientific integrity principles are part of a broader set of political practices of industry actors to influence public health policy, research, and practice. It is important to learn about and counter these practices as they risk shaping scientific standards to suit the industry’s interests rather than public health ones.The online version contains supplementary material available at 10.1186/s12992-021-00689-1. Actors in the tobacco, alcohol, and ultra-processed food industries use a broad range of political strategies to protect and expand their markets –4. Thesesound science” program, hiring respected academics and scientists and using third parties to deny secondhand smoke’s harmful effects . Over the period 2007–2012, ILSI published COI principles focusing on food science and nutrition research. These publications resulted from different meetings of individuals from the food and agro-industries and academia. At that time, ILSI published on financial conflicts and scientific integrity in food science and nutrition research . The success was in the guidelines being “endorsed by the leadership of three major professional societies. Results of this work have been published in six different peer-reviewed journals and presented at numerous scientific conferences” [A2]. In that same correspondence, Applebaum sent a list of ILSI’s publications on scientific integrity, where one additional article published in 2011 was included. The latter discussed funding in nutrition research and was published with support from ILSI . Applebaum, therefore, called ILSI’s food companies members for the “development of criteria for participation on scientific advisory panels and establishment of appropriate protocols for successful public/private partnerships to advance public health” [A2]. Food companies were asked to contribute to this task by paying a fee of US$10,000 each [A2].The period 2012–2013 was a turning point for ILSI, where the discussion on COI in science shifted to the use of science in policy. In her 2012 letter mentioned above to ILSI members, Applebaum stated that there was a “COI and scientific integrity” working group produced two publications. The first provided suggestions on selecting experts to advise in public policy decision making  had also been asked to work on principles re selection on gov’t panels since our own U.S. gov’t has raised the issue of working w/ industry as a criterion for non-inclusion” [A4].In January 2014, in a personal communication to prominent physical activity researchers from the US, Applebaum explained that she “offers counsel on meeting [challenges] in communicating about the work of emerging public-private partnerships”  on best practices for advisory committees”, when the FDA was developing its own COI guidelines [A9].approached ILSI North America to collaborate” [A109] on activities that would “stimulate the expansion, accessibility, and acceptance of PPPs by unifying and moving existing principles for food and nutrition research PPPs forward” [A49]. The ASN convened representatives from the U.S. Department of Agriculture, ASN, Academy of Nutrition and Dietetics, American Heart Association, Centers for Disease Control and Prevention, FDA, Grocery Manufacturers Association, and National Institutes for Health, amongst others [A50]. An individual from the U.S. Department of Agriculture, Klurfeld, and Rowe, a consultant for ILSI, co-chaired a newly formed “Working Group on Conflict of Interest & Scientific Integrity” [a name similar to that of ILSI’s “COI and scientific integrity” working group] . In 2014, the working group had regular emails, calls, and a face-to-face group meeting in December [later called the “COI Summit Consortium”], to agree on a set of PPP principles . An ad-hoc steering group was also formed with three USDA staff and a consultant from ILSI, and an ASN staff member [A29].In parallel, during late 2013, the ASN “U.S. government-wide Interagency Committee on Human Nutrition Research” [A29]. It was formed in 2011 and included a component on PPP, “in part in response to [a] 2011 Presidential memo directing agencies to develop public-private partnerships in areas of importance to an agency’s mission” [A29]. In our FOI documents and when justifying the PPP, the ASN made further reference to President Obama, who “issued a Presidential memorandum in July 2014 encouraging government at all levels to work with private partners on developing infrastructure to lay the foundation for future prosperity” [A41].The whole project was formally led through a “summit or collection of major professional societies and federal agencies coming together in support of PPP principles ( …). At the conclusion of the summit, the professional societies would agree to a consensus statement on private funding for research and general acceptance of principles for PPPs ( …). it might be helpful for societies who publish journals to have their editors participate in summit” [A8].In May 2014, an employee from ILSI sent an email to lead American researchers and employees of federal agencies , describing the proposed outcome of the newly formed PPP project, a “an excerpt of the article appeared in the Journal of the Academy of Nutrition and Dietetics, Journal of Food Science, Nutrition Reviews, and Nutrition Today” [A66]. In the publication, the authors made clear that the group took “the ILSI North America published principles as a starting point” . The American Public Health Association declined to endorse the principles but did not justify its decision [A24].Soon after, in 2015, a peer-reviewed paper outlining the PPP principles in food and nutrition research was published in the Journal of Clinical Nutrition  and “an g point” , given triteria” . The priThere is a meeting today at the National Academies to discuss [PPP] as defined by work that ILSI North America did. ASN and U.S. Department of Agriculture organized the meeting and we expect a number of scientific organizations to adopt the ILSI North America principles” . Speakers at that event included the U.S. Department of Agriculture Chief Scientist and Under Secretary, Research, Education, and Economics Dr. Catherine Woteki (keynote address), as well as an ILSI consultant, and an Institute of Medicine Senior Scholar, amongst others .On 16 June 2015, the PPP principles were launched at the National Academy of Sciences. ILSI, in its internal communication, talked of the event and principles as its own: “Conclave on public-private partnerships”, where a Declaration would be issued “to provide a transparent and actionable framework for interested public and private organizations that will minimize external criticism” [A110].ILSI and the ASN also had other avenues for disseminating the PPP principles, as detailed in Table Therefore, by having built its own literature on COI principles, scientific integrity, and PPP, and by reaching out to potential allies outside the industry, ILSI naturally became a central and pivotal actor in that discussion.Hereafter, ILSI took yet another step in disseminating its principles into the scientific and policy spheres, beyond that of nutrition research.Hence, after having developed principles for research, and having these principles used to create PPP, ILSI started to evaluate the efforts made by a range of actors to implement scientific integrity principles.U.S. government-wide Interagency Committee on Human Nutrition Research” working group, ILSI, in 2015, through its own working group, proposed to “seek a broader group of collaborators than we have previously worked with in order to have a greater impact; ones that have impeccable reputations and are not focused on only one area of science. Possible candidates are: a. American Association for the Advancement of Science; b. Association of Public and Land-grant Universities; c. Association of American Universities; d. The National Academies” [A80]. ILSI’s working group also suggested that ILSI’s focus “should be on implementation of these principles/best practices” [A80]. The group also proposed that when the COI Summit Consortium “reconvene [s] in two years to reassess the PPP principles ( …) ILSI North America could introduce the principles/best practices for scientific integrity and seek endorsement from the nutrition, food science, and food safety professional societies” [A80].Indeed, in parallel to the work undertaken by the “Assembly on Scientific Integrity”, whose steering committee included three academics from the University of Illinois, the University of Wisconsin, and Tufts Medical Center, and five employees from Coca Cola, General Mills, Abbott Nutrition, Ocean Spray Cranberries and Biofortis [A79]. The Assembly was made of “ILSI North America Board of Trustees, all Member Companies of ILSI North America, and the ILSI North America Canadian Advisory Committee” . The Assembly was also “hoping to include government liaisons in the Assembly on Scientific Integrity and it is likely that the ILSI North America Mid-Year meeting in Washington, DC is a better location for government officials to be able to join in-person” [A107]. In 2017, the budget of the Assembly was US$122,000 [A107].As part of that work, in 2017, ILSI set up an “efforts by federal agencies, foundations, nonprofit organizations, professional societies, and academia in the United States”  that builds on the first manuscript ( …) to establish the first” rulebook “ on scientific integrity” [A81]. ILSI convened a meeting in March 2017, where a broad range of actors would discuss the new scientific integrity principles . The new “Scientific Integrity Consortium” was made of “representatives from four U.S. government agencies, three Canadian government agencies, eleven professional societies, six universities, and three nonprofit scientific organizations” . The meeting was organized at the National Academies of Science, Engineering and Medicine as part of the “Government University Industry Research Roundtable” , in the same venue used for the launch of the 2015 PPP principles. The group then continued to meet virtually and in-person in 2017 and 2018 . The “Scientific Integrity Principles and Best Practices” were finally published in 2019 in Science and Engineering Ethics [the convening of the Scientific Integrity Consortium was a significant step for ILSI North America in building upon our work on scientific integrity and engaging the scientific community beyond the nutrition and food safety community” [A86]. The long COI section in that publication reports on the many interactions between several of its authors and industry actors  (see Table educating attendees (with a focus on young researchers/post docs) on the components of scientific integrity” [A81]. This time, the audience reached beyond that of nutrition.The scientific integrity principles, like those for PPP, were disseminated through different scientific events, in what ILSI called a “a certification program or accreditation ( …) for individuals or organizations to certify their use of the principles and best practices. ( …). It would be beneficial if government agencies would require the certification or accreditation in order to apply for a grant” [A106].In some of these events, ILSI’s official role in developing the principles was presented as a Consortium member, not its convener [A71]. In October 2017, ILSI shared its Resource Guide directly with the World Conferences on Research Integrity Foundation, who considered using the material for their work . ILSI, at that time, was seeking to collaborate with the Foundation to further expand its principles globally . ILSI also planned to develop a training module to implement the new scientific integrity principles and “share what we’ve learned with the entire federation of global ILSI entities” [A67]. ILSI NA’s 2019 Mid-Year Science Program included a presentation on the “Benefits of More Transparent Research Practices and Bias Reduction Tools” from a speaker from the Center for Open Science [A59]. ILSI started collaborating with that Center in 2017 . In 2017 as well, ILSI Argentina formed a new Scientific Integrity Group [A107]. In 2019, the Brazilian branch of ILSI put the question of scientific integrity in the food area as the main topic of its annual congress [A64], with speakers from different Brazilian federal agencies and universities. That same year, an academic from Chile gave a presentation on scientific integrity for the South Andean branch of ILSI [A65].ILSI is now planning to “invited experts [discussed] some of the challenges that exist for scientists and journals when attempts are made to correct the scientific record - through retractions, corrections or letters/commentaries”, in response to the “heightened visibility of retracted publications during the COVID-19 pandemic” [A68]. The experts in question included some of the authors of the ILSI’s publications presented in our study.ILSI continues to try to drive the discussion on scientific integrity in the present COVID-19 pandemic context. In November 2020, ILSI held a webinar where “In our study, we found that ILSI is a leading actor, not only in the food industry but more broadly in the scientific community, on the development of scientific integrity standards and principles. Internal and FOI documents revealed the food companies’ motives in developing scientific integrity principles. Food companies have joined forces through ILSI, funded its first activities on COI, and have 38% of the authorship of its scientific integrity publications. We have shown that ILSI built a niche literature, one that would become useful for the food industry, when criticism of its funding of researchers emerged in the U.S. in the mid-2000s , 32. ILSIt may be that not all individuals and organizations cited in our manuscript were aware that ILSI was founded and is funded by food companies, and that it is food companies that are shaping scientific integrity principles. ILSI, in its publications and communications, presents itself as an independent organization. However, in several of the documents consulted for our study, such as minutes of meetings and emails, and in the scientific publications mentioned here, industry actors were omnipresent. This reveals a state of affairs where the food industry is seen as a legitimate actor in science and policy and where academics see no problem in working with industry actors . In the What we describe here will not be a surprise for ILSI, as they are transparent on these activities, the researchers they fund and indeed promote these principles widely. Some of the information we found during our study was indeed made public. However, internal and FOI documents revealed the true intentions of ILSI behind their development of scientific integrity principles.This study is novel and builds on several sources to triangulate its findings. Internal industry documents provide a unique behind the scenes look at industry activity and reveal and expose industry behavior rather than speculating about it. This study also has limitations. First, it was beyond the article’s scope to examine all the COI that the individuals identified in our study had with ILSI or other actors in the food industry. Hence, it is highly likely that their relationships extend beyond their authorship on the publications identified here. It is also possible that these authors have published on scientific integrity elsewhere without disclosing their links with ILSI and the food industry. For example, Rowe, a consultant for ILSI on scientific integrity since 2009, published in 2015 a summary of the activities undertaken by ILSI in that space, in one of the chapters, entitled “Principles for Building Public/Private Partnerships to Benefit Public Health”, in the book “Integrity In The Global Research Arena” . In the sophisticated public relations campaigns controlled by industry executives ( …) whose aim is to manipulate the standards of scientific proof to serve the corporate interests of their clients” [Our study goes beyond what we know of the food industry’s nutrition and physical activity research funding. It shows that the food industry, like the alcohol and tobacco industries , tries tclients” . Importaclients” . This reclients” .calls for research integrity reflect core values of the research community. They should not be used as instruments to undermine science or to assist harmful industries” [ILSI’s work on scientific integrity, conflicts of interest and public-private partnerships waters down independent work in that space, puts profits before science, and undermines efforts to address undue influence of industry actors on public policy, research, and practice. The industry-established principles have already shaped the evidence on scientific integrity. In the scoping review we identified as a starting point for our searches by Cullerton et al. , 14 of tustries” . Therefoustries” , 19. Thiustries” . It riskAdditional file 1. Search strategy.Additional file 2. Websites and Twitter accounts of the different branches of ILSI.Additional file 3. Authors on ILSI’s publications on scientific integrity, 2009-2019.Additional file 4. Authors on ILSI’s publications on scientific integrity, 2009-2019.


Patients experience first-hand quality services from nurses who are directly responsible for their welbeing. However, patient dissatisfaction with nursing services remains a problem in most developing countries. Therefore, this study aims to explore patient satisfaction with nursing care services in an Indonesian hospital.A qualitative study with a descriptive phenomenology method was employed. Also, in-depth interviews were conducted with 15 informants, and thematic analysis was adopted to analyze the data.The results of this study are described in the following themes and sub-themes: (1) hospital existence in public eyes: a) service commitment b) accessibility; (2) patients' background: a) religious aspect, b) cultural influence on perceiving health and sickness.Hospital management needs to enhance the quality of nursing services through sustainable education programs and continuous training. These are important to improve nurses' cognition and skills, and further to ensure patient satisfaction and hospital quality. It is the essential responsibility of all health care providers to treat patients with the best facilities , becausePatient satisfaction is one of the factors that determine service quality in hospitals, especially nursing care, which involves direct service delivery to patients. Therefore, the success of health services is solely dependent on the performance of nurses. Consequently, patient satisfaction is determined by the quality of nursing services. Furthermore, nurses spend most of their time with patients. Therefore, they play an important role in their overall satisfaction .However, patient dissatisfaction on nursing services is a problem both in the developed and developing countries. A survey in Europe and the United States which involved 11,318 and 120,000 patients, respectively, showed a low percentage of the quality of nursing services; this ranges from 11% (Ireland) – 47% (Greece).The National Health Insurance (JKN) is one of the several efforts made by the government to improve public health status and patients satisfaction. A previous study showed that JKN increases the service quality to patients with low economic status. However, some of them were not satisfied . FurtherKusbaryanto stated that one of the importance of accreditation is the provision of standardized facilities and infrastructures to ensure hospital quality and patients' satisfaction . These end October to 12th November 2019 in a General Hospital. Prior to this interview, each respondent was asked to fill demographic data including his/her occupation, education, length of stay, age, ethnicity and religion. The interviewer's guide was based on the dimension of service quality such as responsiveness, reliability, assurance and empathy during their time with the nurses.This study adopted a qualitative design with phenomenology approach. Ethical approval and study permission were obtained from the University Research Ethics Committee and the director of the general hospital. A total of 15 respondents were randomly selected with several criteria, which include 3 or more days of hospitalisation, adult patients with stable condition, good consciousness, and the ability to communicate. Also, both oral and written informed consents were obtained and the participants were aware of their voluntary participation and their right to withdraw from the study at any time. Furthermore, the interview was conducted from 2This study uses thematic analysis  in five Demographic data: From a total of 15 Muslim respondents, 9(60%) were females while 6(40%) were males. Also, 8(53.3%) were hospitalized for more than 3 days, and 7(46.7%) were over 47 years old. Furthermore, 6(40%) of the participants had high school and the majority were housewives.The categories identified in this study are shown in Hospital existence on public sight: According to the participants, hospital existence on public sight was seen in hospital commitment. Most of them argued that the image of nurses was quite good. This is proved in their attitude and behaviour in the dispensation of medicine as well as their great knowledge and competencies when providing care.“Nurses tell us about our health condition since we don't have enough knowledge. Also, they make instant provision for our needs, which is very nice…” (P1).Some of the participants stated that good manner shown by nurses during their service delivery to patients tends to cure their diseases.“Sitting here has not bothered our heart at all… I am always glad to see the nurses. We feel that our health has improved due to the special care of the nurses, even though the illness still exists in our body…” (P5).The ninth participant also said:“The nurses have good manner, they address us politely and treat us gently. They never frown, that is nice. We will get well…” (P9).They also stated that there was an improvement in nurses' manner and responsiveness compared to the old time.“I saw that the nurses are more friendly. It was quite different from before. Long ago, when we seek for their attention, we are not immediately attended to; we are not really cared for… Nowadays, they respond instantly to our call. The main thing is, their services are already better and they are friendly” (P8).Others reported that accessibility also influences hospital existence in public sight. Besides the proximity of their residences, they are members of National Social Insurance (BPJS). Therefore, it is relatively easy to reach the hospital.“We live in nearby villages., It is closer here. We are also under the national insurance” (P8).Patient's cultural aspect: Religion influences welbeing and the state of health that emerges from the values, norms and behavioural beliefs of the patients. These, therefore, affect their perspective of nursing services. Furthermore, they believed that sickness is a test from the Almighty Allah, and whoever is afflicted will recieve forgiveness of sins as long as they exercise patience with the condition.“… as for we getting sick, perhaps we already have many sins to Allah; by this Allah may forgive us” (P3).The ninth respondent also said that sickness is a test and it is necessary to get Allah's forgiveness, as expressed below:“We are sick. This is the test from Allah. In this way, may our sins be forgiven, we just need to be patient (P13)”.Besides patience, the respondents also said that they must show gratitude to Allah, as expressed below:“Everything that is given by Allah are for our wellbeing. Therefore, being grateful is better than complaining” (P12).Cultural aspects from the patients also influence participants' views concerning nursing services. Muslim values as depicted above have a vivid impact on the way they see health and sickness. Furthermore, participants respect nurses' performance and assume that all services they recieve are satisfactory. Therefore, they need to be thankful.“I am really touched with their care [showed sad expression and watery eyes]. I always appreciate them when they administer medicine. I am grateful and fortunate to be here and we are indebted to them [replied while wiping her tears]”(P12).Feeling of accepting the provided services: Mistakes or shortcomings by the nurses is not a burden to very tolerant patients. This is evident in a patient's statement below:“…We just want to be treated, irrespective of the service quality… it is enough. As I mentioned earlier, we have no complaints about them. Though they may have small flaws, it makes sense because they are human beings” (P8).Furthermore, the interview with the participants showed that their expectation in nursing services is low. This is evident from the stated sentence of some participants below:“…it was appropriate with our expectation, we should not expect very high” (P1).“I don't expect many things. I think they treated us well; their services are satisfactory. Alhamdulillah (Praise to Allah) (P15).The service quality of a hospital has positive and significant effects on customer satisfaction. A higher service quality significantly increases customer satisfaction and vice versa . NursingThe quality of health services basically depends on patients' satisfaction with nursing activities, a high service quality amounts to patients satisfaction and vice versa . This isFurthermore, all the participants are members of National Social Insurance (BPJS) that pay for all their treatment. With this insurance, it is expected that better healthcare will be provided from start to finish . In addiThe majority are Muslims in the country; therefore, they have strong Islamic values and ideologies in daily life guided by Al-Quran and Hadith (Prophetic teachings). Islamic belief plays a significant role in decision making, family dynamics, health practice and its service as well as utility among the believers . MoreoveIn conclusion, hospital management is expected to enhance nursing service quality by establishing sustainable education. This will improve nurses competencies and help escalate patient satisfaction as well as hospital service quality.


Covid-19 has been an unprecedented time for social work as a profession and evenmore so for marginalized communities. This paper shares the reflections of threeself-advocates , a social worker, and a social work educator andresearcher. It is intended as a rallying cry for social work to rethink how wedeliver services to ensure that people who have already been made vulnerablethrough oppressive ableist practices and assumptions are not put at greaterdisadvantage at times like Covid-19. Hearing directly from self-advocates, welearn of their exclusion from pandemic planning, and of the ways that physicaland social distancing protocols have worked to exacerbate the isolation,marginalization and inequities that people labelled/with intellectualdisabilities have experienced over the years. We are called upon to moreactively focus on advocacy efforts with people labelled/with intellectualdisabilities to increase their involvement in planning, as well as access tosupports, and to ensure that they do not remain “the left behind of the leftbehind” . As has become undeniably clear, the Covid19 pandemic has not impacted people equally:long-standing social and structural inequities and injustices have significantlyincreased risk, harm, and disadvantage for some groups over others. The None of this has come as a surprise to us. It was anticipated. Each of us, in shared andseparate ways, have for years (even decades) been speaking to the lack ofacknowledgement and meaningful action towards addressing these inequities. What we alsofeared with the pandemic, was that people labelled/with intellectual disabilities wouldfare even worse. From our various vantage points, we see how the pandemic has brought tothe surface, and intensified, the countless struggles that have persisted over the yearsfor people labelled/with intellectual disabilities. We see too the alarming lack ofattention being paid to this. Thinking about people labelled/with intellectual disabilities as “the left behind of theleft behind” risks overwhelming us as we are once more confronted with the extent andimpacts of societal devaluation of people labelled/with intellectual disabilities. Facedagain with the difficulty of achieving meaningful and lasting change. It also risksreinforcing their identification as only and always ‘victims’, thereby making invisibletheir actions during the pandemic. We have also heard the talk and wondered as towhether the pandemic might be a watershed moment, an awakening and a reckoning. The ideathat by having disrupted so-called ‘normal’ ways of being and doing – more specifically,disrupting what many with privilege understand to be ‘normal’ – the pandemic offers anopportunity to work towards ‘real’ change, to address the inequities that have become sovisible and, we hope, harder to ignore.As a group, we are alarmed by what we are seeing, hearing and experiencing, particularlyby the invisibility of people labelled/with intellectual disabilities in pandemicplanning and responses. Kevin stresses the importance, the necessity, of educatingothers. We feel a practical urgency to share our experiences, our worries and ourefforts, and to reflect on how to take advantage of this moment, with the recognitionthat for many communities, a return to ‘normal’ is neither needed nor desired. How mightwe  and social workersmore broadly, use our knowledge, experience, networks and skills going forward, to worktowards change?Hailing from Ontario, Canada, Marissa, Kory and Kevin identify as self-advocateslabelled/with intellectual disabilities, each connected to local and nationalself-advocacy networks; Sue as a practicing social worker with an extensive history ofadvocacy and activism with self-advocates communities; and Ann as an educator andacademic researcher with a lengthy social work practice background and extensiveengagement with self-advocates in inclusive and activist research projects.“First – is getting the support I need. That’s huge. Second is being able tosocially distance. I use a wheelchair and can’t get off the sidewalk if someonedoesn’t walk around and stay 6 feet away. Also, it’s really hard to communicatewith staff who are wearing masks – I can’t understand what they’re saying orread their lips. It’s heartbreaking. Next is my managing my anxiety – my mentalhealth. I just don’t know when this is going to end, what the future looks like.Staying healthy is another big worry – the disability community is at risk forCovid-19, and I’m nervous.”The threat of contracting the virusand the impacts of safety protocols have taken a toll on Marissa, and she is worried,anxious and afraid. In similar and different ways, these feelings resonated with all ofus.As a sobering start to our conversations, Marissa listed many interconnecting issuesarising for her during the pandemic:We have heard from many self-advocates worried about contracting Covid-19, in the generalcontext and, more particularly, from group home staff who are sometimes inconsistentwith following safety guidelines, especially if travelling between different homes. Welearned early into the pandemic that, due in large part to social devaluation andprivatization of social services, people labelled/with intellectual disability –especially those in congregate care settings – have been put at greater risk ofcontracting and dying from Covid-19 . And thaAnn and Sue have worked and shared relationships with people labelled/with intellectualdisabilities for long enough to remember when services were less privatized, when moremoney for supports and staffing was available, when the aims of thede-institutionalization movement (while not sufficiently embraced) had more of aninfluence on policy and practice. The historical and contemporary contexts of systemicableism are at play in the current range and complexity of pandemic impacts on peoplelabelled/with intellectual disabilities. The question of “what to do” is complicated bythe knowledge that what Marissa shared is just a sample of what people labelled/withintellectual disabilities are facing. Complicated by people’s variable support needs,existing/missing resources, and living arrangements. Ann and Sue, indeed, all socialworkers and people within and engaged with disability communities, are also living outthe pandemic in different settings and circumstances. And systems are notoriouslydifficult to change. How then to intervene? This led us to the question of managing thetension between ‘safety’ and ‘well-being’, in particular, to addressing the impacts oflock-down and consequent Visitation Bans on people labelled/with intellectualdisabilities.No longer able to go to work, or attend his regular programs, Kevin has found staying athome and the social isolation following from that extremely difficult: “Oh it's so hard,it's hard you know? I miss , I miss seeing people.”Attempting to cope with Covid-19 and control potential outbreaks, developmental servicesagencies were quick to follow Public Health protocols and implement strict VisitationBans for residential programs. Other than a staff person who stops by his apartmentregularly, Kevin sees no-one, and wonders why staff can’t visit more often, or staylonger. These bans are motivated by a desire that is difficult to fault – to keep peoplesafe – a motivation that Kevin and other self-advocates we have heard from agree with.Nonetheless, these bans are disruptive and exacerbate the social isolation alreadycommon  in the lives of many people labelled/with intellectualdisabilities. As people focused on removing systemic barriers to inclusion, theimposition of these protections on a community already experiencing unacceptable levelsof exclusion has felt like a ‘sucker punch’.What troubles us is that the manner in which bans have been imposed fails to considerdisabled people’s needs, concerns and realities. As Kevin shared, significant impactsmay follow from the disruption of routines, and the activities, support and socialconnection they bring. Combined with a not uncommon lack of access to technology, hestruggles to occupy his time and is increasingly more anxious. Regular staff check-ins,while useful, cannot make up for what has been lost.This is, however, not only about social isolation and loneliness. Visitation bans whichrestrict access to non-agency support persons have complicated Marissa’s life in manyways, necessitating extra work and much stress. Even food access has become an ordeal.Revealed is an apparent lack of understanding or dismissal of the importance of personalsupports, and networks of support that are independent of residential agencies, topeople labelled/with intellectual disabilities. And of the kinds and amount of supportthey can provide.really neededsupport, pressuring him, saying ‘only one person was allowed in’. My brother wasscared and gave in and said, “I guess not”. The advocacy didn’t kick in becausewe were nervous we’d be told we were causing a scene and be denied treatment. Mybrother felt so bad, that he did something wrong by bringing a support person tothe hospital and went into the hospital without the support heneeded.”“My brother has intellectual disability and schizophrenia and asked me to supporthim at a hospital appointment during Covid-19. We contacted the hospital the daybefore to plan and prepare them but when we got to the hospital it wasdifferent. The screener asked my brother if he The potential consequences to people labelled/withintellectual disabilities of such restrictions are of great concern. Arguably, nobodyfares well in these situations – not Kory’s brother, not Kory (worried and upset withhimself for not advocating for his brother) and, likely, not the medical staff. Theindividual may be frightened, anxious in a hospital setting alone. Consequently, theymay struggle to comply with treatment requests made by hospital staff unfamiliar withtheir support needs or communication style. This lack of ‘compliance’ may result inunnecessary medication or restraints. This type of experience, like the loss of socialand supportive relationships for extended periods of time, may negatively impactphysical and/or mental health.In another example speaking to this tension between risk, safety and well-being, Koryspoke about Public Health protocols and prohibitions against family members, carers orsupport persons accompanying disabled people in the hospital.Marissa and Kevin are looking for answers, wanting to know when and how this will end.Like many others denied access to communication technology, lockdown has meant Kevinspends too much time watching TV, following the news but not always understanding whathe is hearing. What matters here is that televised news reports are rarely accessiblefor people labelled/with intellectual disabilities – this can increase anxiety. Korycautions people to understand that some people labelled/with intellectual disabilitiesare experiencing “this whole new aspect of mental health.” Uncertain as to who to turnto, who to trust, some are reluctant to ask for help, worrying that “they’ll be ignored,locked up, drugged without reason”, or “that they won’t be believed.” And we are wellaware that such worries are not unfounded – historical and contemporary examplesabound.Marissa was adamant that “People need to have access to supports. We needed to talk toother people about this.” Connecting online, while actively promoted as a solution toreduce social isolation, actually demonstrates the invisibility of people labelled/withintellectual disabilities in pandemic responses. As a social worker at ARCH DisabilityLaw Centre, Sue coordinates Respecting Rights (RR), a project led by self-advocates withsupport from ARCH lawyers. When Covid-19 hit, RR in-person groups came to an abrupthalt. Sue, Marissa and Kory rapidly worked to get people online for meetings. It soonbecame clear that many self-advocates were left out. Most were without access todevices, support persons to teach them how to get online, or funds to pay for internetfees. In response, Sue and RR self-advocates launched the Get Connected campaign,reaching out to social media to help support people’s online access. While these moveswere successful for some, the shift to online excluded far too many others. That peoplelabelled/with intellectual disabilities were prevented at this time from learning abouttheir rights, and that a campaign to secure funding to provide people labelled/withintellectual disabilities access to digital technology was necessary is, to our minds,inexcusable.The pandemic has proven similarly disruptive for all involved in an inclusive researchproject underway for Ann and a large group of co-researchers labelled/with intellectualdisabilities, in which project work was being done collaboratively, in face-to-faceworkshops. With pandemic lockdowns, the lack of access to technology, support persons,and funding for internet fees initially prohibited most co-researchers fromparticipating in project work. Ann realized however that the work of the project was notwhat mattered most. Shifting her attention to supporting co-researchers, she set uptelephone connections between co-researchers, and also linked them with project researchassistants (RAs) based on relationships developed during the project. These phone callsare more personal and are separate from calls from RAs and other project membersnecessary to keep the project moving. Co-researchers have appreciated the socialcontact, as well as the opportunity to remain actively involved in project work, andhaving things to do. Nonetheless, such efforts are insufficient, and merely scratch thesurface of what co-researchers need. In terms of the research project, made visible isthe lack of funding for access provided by research funding bodies and the denial of therealities of social and economic inequities that can impact participation inresearch.Social work practice, research and education has paid insufficient attention to peoplelabelled/with intellectual disability . CombineFrom our perspective, if people labelled/with intellectual disabilities were incorporatedinto planning decisions as a matter of course, plans would likely look much different,still achieve their aims and, importantly, reduce differential risk. Their exclusionfrom planning can arguably be explained by disabling attitudes and assumptions of(in)ability and value. Kevin wonders who will read this paper and what they will do tomake things better – that is why he participates in research and writing; he wants tohold to account people with the power to effect change, including social workers.Disrupting and changing ableist structures and systems, acknowledging that social workis implicated in these systems, is essential and, admittedly, an ongoing project butthere are ways to move forward.withpeople labelled/with intellectual disabilities in advocacy and activist efforts towardschange. They must, for example, join with them to speak against disabling poverty andeducational discrimination that routinely denies people labelled/with intellectualdisabilities digital literacy education, access to technology and supports, anddevelopment of alternative means of communicating. Recognize and attend to realities ofsocial isolation, to the creation of opportunities and the development of networks ofsupports. Advocate for research funding that provides for disability access. Workingwith self-advocates to create greater public awareness, effectchange in policy and practice in developmental, health, education and mental healthsectors, and to make demands of governments all fall within the purview of social workand align with social justice aims.To begin, social workers must accept that a return to ‘normal’ is to be resisted –‘normal’ has not worked in the past, has proven harmful, and will not be any better inthe future. Social workers, as a group, must engage more directly madevulnerable, not only by the inattention and inaction of governments duringCovid-19, but also that of social work.We acknowledge that social workers have also experienced constraints during Covid-19.Nonetheless, we urge them to learn from the ways that people labelled/with intellectualdisabilities have been left behind, further isolated and