Patients with end-stage kidney disease experience serious complications which affect their lives. Few studies have investigated the patients’ quality of life qualitatively from the perspective of family caregivers as the closest individuals to the patients. The family caregivers are directly involved in the patients’ disease progression and observe the changes, problems, and complications of disease and hemodialysis. This study aimed to explain the components of quality of life in hemodialysis patients from the family caregivers’ perspective.In this qualitative inductive content analysis, 16 family caregivers of hemodialysis patients, presenting to the teaching hospitals of Tehran, Iran, were enrolled via maximum-variation purposive sampling; sampling continued until reaching data saturation. The data collection method included in-depth semi-structured interviews. Also, an inductive content analysis was carried out based on Elo and Kyngas’ method.A total of 311 codes, 19 subcategories, eight generic categories, and three main categories were extracted in this study. The main (and the generic categories) included mental and psychological problems , social disruption , and physical problems .Family caregivers can be valuable information sources for formal caregivers to plan treatment for chronically ill patients who are mainly cared for at home. The present results can help us increase the existing knowledge on the impact of end-stage kidney disease and hemodialysis on the patients’ quality of life. It seems that addressing the issues related to quality of life, mentioned by the caregivers, can positively affect the patients’ quality of life and even reduce the caregivers’ burden. End-stage kidney disease (ESKD) is a life-threatening condition in which the kidneys lose their normal function . PatientPatients with ESKD need renal replacement therapies to survive . PreviouThe World Health Organization (WHO) has defined QoL as “an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns. It is a wide-ranging concept, influenced in a complex way by a person’s physical health, psychological state, level of independence, social relations, and relationship with the salient features of their environment.” . BesidesPrevious studies have reported a low QoL in hemodialysis patients . InformaThe review of the literature indicated that few studies have investigated the patients’ QoL qualitatively from the perspective of the family caregiver as the closest individual to the patient, who is directly involved in the disease process and observes the changes, problems, and complications associated with ESKD and hemodialysis. To address the existing knowledge gap, the present study aimed to qualitatively explain the components of QoL in hemodialysis patients from the family caregivers’ perspective.The inductive content analysis method  was applThe participants included the family members or relatives of hemodialysis patients, who were responsible for providing informal care. They were selected through a purposive sampling method with maximum variation in terms of age, gender, occupation, education, and relation to the patient. In qualitative research and purposeful sampling, researchers seek to find people with extensive experience in the research concept (key informants). In this study, the participants were identified by the researcher at the hospitals as the research setting. One of the researchers communicated with the patient and the caregiver in the hemodialysis ward. After introducing herself and the research objectives, the caregivers were invited to participate in the study. The study setting included the teaching hospitals of Tehran, Iran.The inclusion criteria were as follows: willingness to participate in the study; caring for a patient over the age of 18 years; being the patient’s main caregiver; speaking Persian; and not being paid for caregiving services. To achieve maximum variation in sampling, the researcher sampled individuals presenting to hospitals in different parts of the city. There was no predetermined sample size, and sampling continued until reaching data saturation.The data collection method included in-depth, semi-structured, face-to-face interviews with open-ended questions. The first author, trained in qualitative research, conducted the interviews from June to September 2020. The interview guide was developed and examined in a sample. It contained open-ended questions based on the study objectives, which were formulated after consulting the research team. Some guide questions were asked in the interviews . Moreover, based on the data flow, exploratory questions were asked from the participants to deepen our understanding of their experiences. The interview guide is presented in Table The time of the interviews were arranged according to the participants’ desires, and the interviews were held at in the companion’s waiting room in the hemodialysis wards of teaching hospitals in Tehran, Iran, in the absence of any outsiders. Before the interviews, written informed consent was obtained from the participants. The interviews were recorded with the participants’ consent. The demographic characteristics were also recorded in relevant forms. No interviews were repeated, and no participants withdrew from the study. Finally, 16 family caregivers of hemodialysis patients were interviewed. The average duration of the interviews was 35.55 min.Data analysis was performed simultaneously with data collection. The interviews were recorded and transcribed verbatim by the first author. Data were analyzed using an inductive content analysis approach, based on Elo and Kyngas’ method , which cIn this study, consensus coding was employed. The first and second authors coded the interviews. The coding results were then reviewed in several sessions by the research team, and a single, agreed-upon coding was achieved. Next, data abstraction was performed by forming subcategories, generic categories, and main categories. In the final phase, the analysis process and the findings were reported. The combination of the following criteria was used to assess data saturation: achieving high-prevalence codes; assessing new data after a new interview and the number of participants interviewed (more than nine participants); and appraisal of achieving meaning saturation and extensive understanding of the research concept (based on consultation with the research team) , 21.Guba and Lincoln (1994) proposed credibility, dependability, transferability, and confirmability to describe practical techniques for achieving data rigor . This stSixteen family caregivers were included in this study, none of whom were eliminated. Twelve participants were female, and four were male. Other demographic characteristics of the participants are presented in Table This category consisted of generic subcategories, including depressive mood, incompatibility and reduced tolerance, mental exhaustion, and deprivation of natural needs, which are described below:“My mother often cries.” The family caregivers of hemodialysis patients believed that their patients experienced some psychological problems. Some of them believed that their patients were low-spirited and had symptoms of depression. In this regard, one of the participants said:“She is depressed now; she is so down.” Also, another participant stated:“You see, he has no hope for a good future. He feels that there is nothing left of his life.” One of the issues discussed by the caregivers was the patient’s despair. From their point of view, the patients felt that their life was over; in other words, they were waiting for their death and were not hopeful about the future. In this regard, one of the participants said:“They are all sad and depressed; they are hopeless. They ask if they can die sooner or wish for death. They are very upset and give up on life.” Moreover, participant No. 2 said:“She is lost in her thoughts of hemodialysis. If she has dialysis today, she will think about it all day; she will also think about it the day after. She gets really annoyed by it, which is quite noticeable. It’s completely tangible.” According to the caregivers, hemodialysis had become a constant preoccupation for the patients. Besides, the patients gradually grew impatient and constantly thought about hemodialysis:“ … My father isn’t in a good mood when he comes back from dialysis and goes right back to his bed; he has no patience for doing anything.” The constant mental conflicts of patients cause communication problems, depression, and in many cases, sleep disorders and anxiety. In this regard, one of the caregivers said:“My mother doesn’t still believe that hemodialysis needs to continue until the end of her life.” Some caregivers stated that their patients had not yet accepted hemodialysis as an inevitable procedure during their life. They argued that the patients ignored the limitations of the disease and hemodialysis and considered them to be transient and terminable:“One of our problems is that she hasn’t yet accepted that she has this disease and that she must deal with it. Because she doesn’t accept it, she gets more annoyed by it.”Also, participant No. 5 stated:“Honestly, she’s become a little bit stressed, nervous, stubborn, and sensitive about some issues; it has become worse since dialysis.” The caregivers stated that their patients became more nervous after starting hemodialysis. In this regard, one of the participants said:“He’s become like a little kid. He’s spoiled and stubborn and reacts harshly when I say anything slightly undesirable to him as if I was cursing or beating him up.” Meanwhile, some caregivers noticed that the patients stubbornly resisted the caregivers’ advice and reacted harshly if anything was undesirable to them. One of the participants remarked:“…He pretends to be oppressed by me. He’s become very greedy for money. I mean if the kids ask him if he needs money, he does not say no, although we have everything we need in our house, and we also have money … ” The caregivers also reported that their patients showed new abnormal behaviors after starting hemodialysis:“He thinks I'm oppressing him.” According to some caregivers, the patients believed that the caregiver was cruel or uncompassionate toward them or would intentionally harass them. In this regard, a caregiver said:“She’s nervous and stressed.” From the caregivers’ perspective, fear and stress were other psychological problems of hemodialysis patients. Generally, the patients become stressed after the diagnosis and the onset of hemodialysis. One of the participants said:“She gets so stressed the night before hemodialysis that she can't sleep.” Moreover, participant No. 5 made the following remark about her mother:“Well, these catheter insertions bother her.” Suffering is one of the psychological issues affecting hemodialysis patients. The caregivers believed that hemodialysis and its requirements, besides limitations imposed by ESKD, cause suffering for the patients. One of the participants believed that painful catheter insertion, which is repeated 3 days a week, causes suffering for the patient:“Because my husband is a food lover and is always thinking about eating, it is very challenging for him to avoid eating most things. It’s so difficult.” From the perspective of some caregivers, the food and fluid intake restrictions in the patients’ therapeutic regimen are associated with suffering. Participant No. 10 said:“It is as if he is exhausted all the time. He doesn’t want to commit to anything; he says he is exhausted or bored.” The majority of the caregivers stated that exhaustion was one of the persistent problems of their patients. In this regard, participant No. 4 said:“They get so exhausted and bored under the machine.” Participant No. 2 also stated:“He has sexual desires, but he can’t perform … He should take pills.” The nature of ESKD and the psychosocial consequences of this disease and its treatment cause sexual dysfunctions in hemodialysis patients. In this study, the caregivers who were the patients’ spouse reported sexual dysfunction in their partners. Participant No. 8 said:“Their sexual desire is majorly reduced. Even if they have it, they can’t reach an orgasm. All patients are the same in this area. I’ve asked around.” Moreover, participant No. 15 said:“He sleeps all the time … For example, we had no dialysis session yesterday, and I was at home from 7:30 in the morning until 7:00 in the evening. He got up, had breakfast, and slept again.” These problems can lead to some emotional and communication problems between the patients and their caregivers (spouses) and create a feeling of guilt in the patients. Besides, the caregivers of hemodialysis patients witnessed sleep disorders in the patients. Some of them reported oversleeping in the patients, while some reported sleep disturbances or short, disturbed episodes:“She sleeps in short, disturbed episodes.” Also, participant No. 7 said:The category of social disruption consisted of two generic categories of social isolation and social threats, which are described below:“Since she has had the permacath, she doesn’t like to join social gatherings. She’s told us not to let anyone come and visit her. She doesn’t like it.” The caregivers of hemodialysis patients witnessed the negative impact of ESKD and hemodialysis on the patients’ social life. They stated that their patients were reluctant to socialize after the onset of their disease and treatment and expressed their feeling of loneliness:“She’s become a little too reserved to express herself or vent her feelings.”Participant No. 13 said:“She feels lonely; this disease has made it worse.” Also, participant No. 5 said:“She’s anxious and restless about always having me or someone else by her side. Her dependence on me has grown.” One of the other problems of the caregivers was the increased dependence of their patients on them. Participant No. 7 said:“He can’t go to work anymore; now, he’s at home all the time and doesn’t work … ” According to the caregivers, many hemodialysis patients lose their job due to fatigue, weakness, or need for hemodialysis, leading to social problems and isolation:According to the caregivers, the patient’s job loss, especially when it is the only source of family income, imposes a financial burden on the family. This burden negatively affects the QoL of patients and their families.“You know, some relatives think he’s infected.” The caregivers stated that some of the patients’ relatives behaved as if the patient had a contagious disease:This social stigma constitutes a social problem for the patient. Also, according to some caregivers, changes in the patients’ appearance due to the disease trigger negative reactions in people in the community, causing the patients to limit their social interactions.This main category consisted of two generic categories, namely, general complications and disabilities and defects in the normal functioning of organs.“She has little appetite. She eats a tiny amount of bread (she shows the size of bread with her fingers) for breakfast.” The caregivers reported multiple symptoms and physical problems in the patients. They described numerous general problems, such as loss of appetite, nausea, and fluctuations in blood pressure, which were the main complaints of the patients. One of the caregivers stated:“Her calcium level has dropped due to the disease, all of her teeth have fallen out, and now, we have to remove all of her teeth.” “They develop hypotension during hemodialysis, which is very annoying for them.” Moreover, two other participants stated:“The problem is that they don’t feel well after hemodialysis. He’s not ok at all after it. He only rests afterward until it is time to come back again.” “He’s always in bed.” “Her ability is deteriorating day by day…” According to the caregivers, hypotension led to weakness, activity intolerance, and dependence on the caregivers for the activities of daily living. Also, it increased the risk of falling in the patients. The caregivers believed that dealing with weakness was an inevitable part of the patients’ lives after the onset of the disease and hemodialysis. They had witnessed a gradual decline in the patients’ abilities:Therefore, hemodialysis and the nature of ESKD affect the physical health and well-being of patients and decrease their QoL.“He gets muscle cramps after dialysis.” Musculoskeletal and mobility disorders were among the caregivers’ problems while caring for the patients. These disorders included muscle cramps, increased susceptibility to bone fractures, experience of bone fractures with minor traumas, and mobility difficulties. One of the participants said:“She may fall; she may lose her balance; she doesn’t feel steady.” Also, according to the caregivers, imbalance, dizziness, and delirium were some other problems of hemodialysis patients. One of the participants said:“My mother is delirious. Her delirium stems from continuous dialysis sessions.”Also, participant No. 5 said:This study aimed to identify the components of QoL in hemodialysis patients from the perspective of their family caregivers. The caregivers believed that the patients’ QoL was affected by the disease physically, psychologically, and socially. The results of the present study are matched with the results of studies conducted on the patients themselves. In Asian countries, including Iran, the strong family structure and bonds, cultural norms, including filial obligations, community expectations, and social factors and a sense of closeness between family members may lead to similarities in the perceptions of caregivers and hemodialysis patients about QoL.Regarding the physical aspect, Han et al. reported physical problems, such as nausea, anorexia, and weakness , which iAdditionally, a review of qualitative studies by Roberti et al.  showed tSkin problems and itching were among other physical problems of hemodialysis patients in various studies , 26; howIn the present study, the participants emphasized on sleep problems of a psychological origin, although sleep problems of a physical origin were also mentioned. Nonetheless, sleep problems were classified in the psychological category, given the higher frequency of psychological factors. On the other hand, in a study by Han et al. , sleep dThe patients’ low spirits and depression were mentioned by the caregivers in the present study. The results of various studies have indicated the higher prevalence of depression in patients with chronic kidney disease . PatientOne of the issues raised by the caregivers in this study was threats to the patients’ employment status. The review study by Roberti et al.  similarlThoughts about death and wish for death were one of the subcategories extracted from the interviews in this study. In this regard, Finnegan-John and Thomas similarly reported thoughts of death in many interviewees . They beMoreover, reduced sexual desire and potency were among other subcategories extracted in the present study. Similarly, hemodialysis patients examined in studies reviewed by Roberti et al. reported sexual problems . AnotherIn the present study, the caregivers reported various abnormal behaviors in their patients. Similarly, Rezaei et al. showed a decrease in the tolerance threshold, increased irritability, poor anger management, impatience, and behavioral changes in patients undergoing hemodialysis . VariousIn the present study, the caregivers reported their patients’ reluctance to communicate with others and mentioned their tendency toward isolation. One of the themes extracted by Lee et al. was intentional isolation. The participants sought isolation because of their lack of interest and motivation in life and indifference to their environment .The present study focused on the caregivers of hemodialysis patients in Tehran, the capital of Iran. Although qualitative studies, such as the current study, do not consider generalizing the findings, the inclusion of caregivers from different ethnic groups and cities of Iran could have increased the richness of our findings; however, it was not possible in this study.In this study, the viewpoints of family caregivers about different aspects of hemodialysis patients’ QoL  were investigated. The present results can help us bridge the existing knowledge gap regarding the impact of ESKD and hemodialysis on the patients’ QoL. Caregivers can be valuable information resources for formal caregivers to plan care for chronically ill patients, who are mainly cared for at home. Overall, attention to different aspects of QoL, mentioned by the caregivers, and addressing the related issues can positively affect the patient’s QoL and even reduce the caregiver’s burden. Future studies are recommended to evaluate the effectiveness of different measures to improve the QoL of hemodialysis patients not only from the patients’ perspective, but also from their caregivers’ point of view.


Participants reported increased domestic duties, blurred lines between home and work, and long workdays. Finding adequate workspace was a problem, and adaptations were necessary, especially when adults shared the same setting for working and childcare. Connectivity issues and concentration difficulties emerged. While some participants reported employers’ expectations did not change, others revealed concerns about efficiency. Mental health issues were expressed as anxiety and depression symptoms, exhaustion and burnout, and no outlets for stress. Fear of becoming infected with COVID-19 and uncertainties about the future also emerged. Pressure points related to gender, relationship status, and ethnicities were also evaluated. Public policies differed substantially across countries, raising concerns about the adherence to unnecessary restrictions, and similarly, restrictions being not tight enough. Beyond challenges, some benefits emerged, such as increased productivity and less time spent getting ready for work and commuting. Confinement resulted in more quality time and stronger relationships with family. (4) Interpretation: Viewpoints on positive and negative aspects of remote working differed by gender. Females were more affected professionally, socially, and personally than males. Mental stress and the feeling of inadequate work efficiency in women were caused by employers’ expectations and lack of flexibility. Working from home turned out to be challenging, primarily due to a lack of preparedness, limited access to a dedicated home-office, and lack of previous experience in multi-layer/multi-scale environments. The COVID-19 pandemic has generated an unprecedented challenge of a forced rearrangement of working conditions for a very large number of professionals. Faced with remote working, people had to adapt to the new working conditions involving professional, childcare, schooling, and household duties alike. Social distancing and isolation caused increasing distress that affected both children and adults and was often reflected in their work performance.While the pandemic has differently affected various professionals regarding remote working, it is assumed that an added difference is related to gender, as the major burden of child, elderly, and other types of care are still predominantly on the shoulders of women.The implications for gender equity regarding working from home in the United Kingdom during the peak of the first lockdown (mid-2020) were examined by Chung et al. using a survey for working parents . In situAccording to Feng et al. remote working created a gender gap in perceived work productivity and job satisfaction. Women reported lower work efficiency and fulfilment than men due to multitasking and higher household-related workload . SimilarContemplating on the possible long-term consequences of home office, Arntz et al. consider that working from home may provide an opportunity for women to catch up with men on work-related aspects; however, in the context of childcare, remote working might accentuate the traditional gender responsibilities .Given the above, the Women in Medical Physics and Biomedical Engineering (WiMPBME) task group of the International Union for Physical and Engineering Sciences in Medicine (IUPESM) has designed and conducted a survey on gender-related work from home under the umbrella of the three main international organisations of our professions: (1) IUPESM, (2) the International Federation of Medical and Biological Engineering (IFMBE), and (3) the International Organization for Medical Physics (IOMP). The quantitative data originating from the survey has been interpreted and published .Based on the 921 responses from biomedical professions, a subset of STEM professionals, representing 76 countries, this paper aims to present and discuss some of the qualitative answers addressed by the survey participants, more specifically the most challenging aspects encountered by professionals, both males and females, during the COVID-19 lockdown regarding remote working.This evaluation focuses on responses to one open-ended question from a larger survey evaluating the impact of the COVID-19 pandemic on gender-related work from home in STEM fields  needing something”; “I am supposed to help them with virtual learning as school is closed. Keep getting disturbed so cannot focus on my work. My husband also trying to work. We have no home office. When one is talking , it is difficult to other. Hated tele-meeting online”. While distractions around the home related to usual hobbies, housework, and pets, “There are definitely more distractions from home that took adjustment ”.The ability to concentrate on work activities in the working from home environment was reported by many participants to be a challenge. Distractions from spouses and children were the primary source of lost concentration, Combine the time of work, rest and home duties, because there is a lot of tasks and is essential optimise the organisation of it”. Unfortunately, in some cases, it was simply not productive to work from home, which had significant negative ramifications for productivity, “Seminars were cancelled by clients”; “laboratory activities were a challenge for me. I cannot pretend that my students have gained technical skills”; “All the working schedules of onsite training got affected, even though we changed to deliver the training remotely, but we can’t provide the full content to our user effectively and we can’t be sure that they can operate the machine on their own”. This was a particular issue among teachers who were required to quickly adapt to the new online mode of education delivery with limited success: “Learning to do online classes”; “Teaching issues”. However, for some, certain working activities had to stop. “No access to lab for work purposes”; “…delayed projects due stopped economy”; “Laboratory work was stopped for some time”; “Not able to access the labs and most experimental works for research are stopped”.Participants identified that adaptations were needed to manage the workload, otherwise productivity decreased, “Communication in working from home environment: Connectivity issues were the biggest barrier to effective communication when working from home. This included issues around no internet connection or slow internet speed, getting access to the virtual private network  and needing to communicate via phone or e-mail instead of face-to-face, “Working with those not able to participate in online meetings and thus working with them via phone & email”; “Poor internet connectivity to the work environment”; “Accessing files stored on my work computer”. To address these issues, some people found that the costs of communicating were higher, “Cost of Internet usage”. Or they had to develop new ways of communicating, “…transform the traditional lectures to a lecture assisted by Internet”.“To speak to people via any video conferencing facilities. The message cannot be delivered effectively”; “Not having in person contact with some colleagues that led to some instances of missed information hand off”; “lag time interaction with peers”.However, despite attempted workarounds, the loss of professional interaction remained an issue and hindered the ability to effectively communicate, “No direct contact with colleagues and students, means that a whole category of spontaneous communication, including questions, incidentals, comments, relationship building, brainstorming, body language, etc., no longer takes place and interactions become stilted, limited and distant. This has successfully engendered fear and distrust. I find this cultural change to be oppressive and difficult to cope with”.One participant felt that changes in communication due to social distancing have had substantial negative ramifications resulting in cultural changes, Wellbeing: Mental health was another area of concern reported by a large proportion of participants. This included worsening symptoms of anxiety and depression, exhaustion and burnout, increased concerns about isolated family members, and not having the usual outlets for stress, “Mental strain of concern for family members isolated”; “The anxiety and depression. I already had symptoms of anxiety before the quarantine started and I had medical tests scheduled, but I had to cancel everything”. Participants also identified that a large proportion of concerns related to mental health were due to social isolation, loneliness and cabin fever, “…the anxiety and stress of confinement”; “Isolation, having to do it all by ourselves”; “Living in the same small place”. However, for others, the lack of a support network during difficult times and the ability to grieve with family and friends caused the most distress, “My son was stillborn and we had no family in the state and therefore no physical support for me or my wife from family”.“The rest/sleep I did manage to get was interrupted because I couldn’t switch off and get to sleep or would fall asleep only to wake up in the early hours and start thinking about work. There was just no respite, my mind was racing for weeks on end, plus the worry of COVID itself and constant bad news—it was tough”.For some, it was difficult to mentally switch off because of the blurred lines between the home and work environment, meaning that recovery time was impacted, diabetic care for ownself”. However, new physical health issues were identified due to new working from home environments and due to stress, “I have developed wrist pain from my less ergonomic home office setup”; “…staying at home many times has gave me some sickness like: lack of oxygen in my system and mostly in my cardiac functions... Not going to jogging regularly that produce a lot of stress I am still suffering Now. I am now diagnose with stomach pain since this pandemic started and my doctor diagnose the cause or it coming from stress”. Linked to physical health were limitations on exercise, which was particularly concerning for people who had routines heavily focused on physical activity, “Not being able to go to the gym. My entire family spends time at the gym almost daily”; “Lack of space for physical exercises”.Physical health was also impacted. People were concerned about trying to stay healthy, especially if they already had underlying health issues, “…COVID-19: Many people were concerned about protection from COVID-19, particularly when they themselves or family members were at higher risk of infection due to underlying health concerns, or they were at higher risk of exposure due to their working environment, “I have an immunocompromised family member. My going into the office on non-remote weeks gives everyone anxiety”; “Managing my own exposure risks during my commute and time spent at work”; “The additional stress of worrying about my immune compromised husband”; “…being sure nor to bring COVID from hospital to home”.“Unreasonable, panic driven decisions and rules. Wrecking the world economy. Watching how easily we are willing to give up freedoms and civil liberties.”;“Watching the country fail miserably at handling the pandemic; seeing other countries put more restrictive measures in place (and then see those measures pay off). Knowing that even if we follow the measures put in place in the UK exactly it is still not enough”; “Never being in lockdown, being unable to relate to everyone else in the world because nothing in my work or life changed, no lockdown, no restrictions”.People were also very mindful of public policies that differed substantially across countries, from no lockdowns in some countries to concerns that civil liberties were being taken away too easily. There were also concerns that they were being expected to adhere to unnecessary restrictions, and similarly, that current restrictions were not tight enough, “Dealing with the uncertainty including while waiting for test results for COVID-19”; “Planning for the uncertainty of the future has been the hardest part”; “…trying to understand the profound changes that the pandemic will bring to our lives”; “Believing what the WHO and others experts say”; “To stay quiet and see so many fake news and bad news on all aspects of life ”; “Politically motivated news”.The uncertainty of COVID-19 was explicitly mentioned by quite a few participants. This included uncertainty about the future, concerns about getting infected and what this would mean for them and their family, and uncertainty about whether to believe health officials and believing what is said by purported experts through the media, “To dress properly with all protective equipment, and wear it all day”; “Partner ill with covid19”; “…my grandfather died for Covid and we couldn’t say goodbye”.A few responders reported wearing personal protective equipment such as masks as challenges, while others reported that they or a member of their family had become ill with COVID-19. For example, No challenges/improvements: A substantial number of participants reported no increased challenges and some even identified improvements as a consequence of the lockdown. People without young children or school commitments found productivity increased due to less socialisation and less time spent getting ready for work in the morning and commuting. Some people also identified that confinement to close quarters resulted in building stronger relationships with family and spending more quality time together, “I’m actually more productive during the lockdown and get to spend more quality time with my household members. I limit my social media and news time to less than an hour a day to avoid becoming anxious about the pandemic. I do not check my e-mail outside of work hours to help establish a boundary between work and home life since I am working from home. I only screen my e-mails for ones from my boss who very rarely e-mails me outside of normal working hours.”; “I have been enjoying working from home and hope to keep it going after the pandemic. It has improved my life allowing me to be more efficient. Less time spent on getting ready [and] traffic”; “I love how much more I’ve gotten to see my kids”; “I thoroughly enjoy working from home, and find myself to be more productive than working in the clinic (fewer distractions and interruptions)”. Some participants were even able to see the brighter side of enforced social distancing rules, “It was a rehearsal for my impending retirement.”Females were more likely to carry the domestic burden of home chores and caring for children, which meant they were also more prone to having issues trying to balance time and demands. They were more likely to worry about the emotional needs of their children and were more likely to report missing social interactions. Productivity of working from home was reported lower among females than among males, with the ability to concentrate a big concern. The expectations of employers and co-workers were also reported to be higher with a substantial workload. Females were also more concerned about the uncertainty of COVID and ramifications related to this and were more likely to experience mental health issues.Among males, they were more likely to identify financial concerns as an issue. From a work perspective, they struggled to maintain effective work practices with limitations to worksite contact and the loss of professional interaction. They were also more likely to report the lack of time outside the house in the fresh air as a challenge, and in terms of wellbeing, it was exercise limitations that were the biggest concern. Males were also more likely to report concerns about not getting COVID-19. Otherwise, they reported no challenges, that nothing had changed, and even improvements due to the lockdown, such as being more productive when working from home. Relationships were broken up into three categories, these being single, in a partnership, or married.Among people who were single, the biggest concerns related to care responsibilities for other family members who were unwell. Work activities were more likely to be affected due to cessation or amendments to regular training and services, and the increased costs of communication were a concern. They were substantially more likely to report social isolation as the biggest issue related to mental health. They were frustrated by the different COVID-19 rules for some people still able to work from the office/allowed to work from home and different rules for different countries. Otherwise, they were most likely to report no challenges, that nothing had changed and even some improvements.For people living in a partnership, the biggest concerns related to care responsibilities for family members requiring visits, missing social interactions with family and friends, and limitations on travel , and social events. The working from home environment was also difficult in terms of finding office space and still needing to perform worksite contact on occasion. People in partnerships were also more likely to report mental health as the biggest concern related to wellbeing, and the uncertainty of COVID-19 had negative impacts on planning for social activities and work.Married couples found the most significant challenges to be associated with the home environment and care for children. The balance of time and demands was a particular concern, as was schooling, childcare and welfare responsibilities for children. In the working from home environment the biggest struggles related to time and productivity, with difficulties concentrating, connecting to necessary services from the office and the loss of professional interaction. Their biggest concern related to COVID-19 was about not getting it and spreading the disease within the family.Pressure points according to ethnicities were evaluated for populations with nine or more individuals responding to the question of the main barriers.African American/Black responders were more likely to report barriers related to travel and social limitations, social interactions, and the inability to support family and friends. Cost of communication, such as through internet connectivity, were a concern as part of the working from home environment, whilst not getting COVID-19 and having the correct personal protective equipment available were the concerns specifically related to COVID-19. They also reported a high burden of care responsibilities for external family, and childcare responsibilities were also a barrier during the lockdown.The biggest challenges experienced by Caucasian populations were found in the home environment and the balance of demands, be that paid work, housework, needs of the family, children’s schooling, and general wellbeing. This was also reported as the biggest issue by South Asian and South East Asian responders. Contributing to this were limitations to office space and finding the time needed for work activities. In addition, the loss of social interactions and the uncertainty caused by COVID-19 were stress points experienced among Caucasians external from the family unit. In contrast, within the family unit, it was their children’s emotional and school needs, missing family and friends, and mental health.The Hispanic/Latin population were the most likely to struggle with social isolation and report financial concerns such as job loss. They also were most likely to report that they were diagnosed with COVID-19 or had an immediate family member become ill. Middle Eastern responders identified substantial challenges in the home environment, with increased domestic duties, issues getting supplies, childcare responsibilities, and children’s school needs. Employers’ workload expectations were also high, with the inability to undertake worksite contact hindering progress in this area.Just under half of the East Asian population identified that nothing had changed, as areas such as Taiwan did not experience any lockdowns at the time of this survey. They were the most likely to report care responsibilities for the family that required visits, and their biggest challenges related to the observation that there were different COVID-19 rules across different countries. Meanwhile South Asian responders reported concerns about the uncertainty caused by COVID-19 and worry about becoming ill with COVID-19. The workload was reported to be very high, with concerns about finding time to undertake all the necessary activities, and they were worried about the emotional needs of their children. The combination of these issues may at least in part explain why they were the population most likely to report mental health concerns. Among South East Asian responders, the most substantial concerns related to the home environment and immediate family. Again, finding the time to balance all the demands of work, childcare responsibilities (particularly for young children) and the school needs of older children were reported as the biggest challenges. Productivity of working from home was problematic largely due to issues finding office space; however, problems faced when delivering training and services meant that some had to be altered while others were cancelled altogether.The results of our international survey clearly showed discrepant outcomes among genders related to home office during the COVID-19 lockdown. Males and females had different standpoints on the positive and negative aspects that originated from remote working conditions, females being overall more affected professionally, socially, and personally than males. Mental stress and the feeling of inadequate work efficiency in women were often caused by their employers’ expectations and lack of flexibility regarding working hours. According to the authors’ previously published results on the quantitative data of this survey, 52.5% females vs. 43.3% males reported that they spent more time working from home as opposed to working from office. Furthermore, while 10.3% males considered that their home office working time has doubled, nearly 18% of females stated that they spent twice as much time working from home as compared to office work [In the circumstances such as the current pandemic, it is not only the employees who have to adapt to new situations and adjust their work accordingly, but it is the duty of the employer as well to provide adequate support to all staff in terms of technical assistance, training (if working from home requires new skills) and wellbeing. An important aspect that employers should consider for both genders in the case of home offices is having flexible working hours (whenever possible) which would ease the burden felt, especially by females when they have to care for small children. While allowing for flexible working hours is more attainable within a company than in healthcare or academia, larger departments could accommodate such schedules with judicious preparations.Among female academics, burnout during lockdown was often reported due to long working hours, research delay due to lab closure, insecurity, and emotional stress. Expectations from academics to work 24/7 are clearly unreasonable. We conclude that students need to understand that in such unprecedented conditions, they must make an effort to work more independently without relying on teachers’ availability around the clock. For stress mitigation, mental-health consultants have a few recommendations that can bring balance to one’s professional life: (1) find ways to detach from stress by undertaking activities that create a sense of wellbeing; (2) do not internalise burnout as a failure; (3) fight the isolation; and (4) do not focus your conversations on mental health and stress .Working from home turned out to be challenging at the very beginning of the pandemic, primarily due to a lack of preparedness, limited access to a dedicated home-office, and lack of previous experience in such multi-layer/multi-scale environments. However, working from home efficiency grew with time as individuals and institutions built more reliable working procedures. Although the situation was improving from the conjuncture side, the operational side suffers mainly due to the blurring of the borders between professional and personal life and all the sequels this carries. Lockdown and social distancing had an immense impact on our daily routines leading to behavioural, cultural and functional changes. While these can be classified as diametrically opposed, their influence over individuals’ well-being in terms of mental and physical health is indisputable.The global pandemic outlined the weakness of the academic system globally while also turning into a major stimulus for further technological development, improvement of communications, and collaboration .While this pandemic found many universities from around the world unprepared for online teaching, thus disrupting education and research ,18, it iThis study has several limitations. Firstly, as with any survey, there is a response bias where participants with strong opinions are most likely the ones to contribute data to the question. In addition, representation from high socioeconomic countries was more prevalent than from low-socioeconomic countries. Therefore, the generalisability of findings is limited, but they still provide important insight across a broad range of STEM professionals worldwide.Data analysis for qualitative studies is subjective and was limited by only having two independent coders analyse all the data; however, a high agreement between them was observed on inter-rater reliability testing.In conclusion, we have presented and discussed the most significant challenges resulting from the COVID-19 pandemic on gender-related work from home in STEM fields- qualitative survey analysis. Our international survey findings indicate that women were more affected professionally in balancing their work, family responsibility, and mental wellbeing than men. Since most of the respondents were obtained from high socioeconomic countries and have shown that the pandemic has a great impact on society, it is highly recommended to further this study and focus on low socioeconomic countries.We hope that the issues and challenges resulting from COVID-19 presented in this paper will give insight scenarios faced by the employees working from home to employers, government, and institution organisations. For future sustainability, initiatives to introduce and implement a continuous program to overcome these current challenges are highly recommended to have an equal balance of gender-related work from home in STEM fields.Although the results are based on the challenges faced by health professionals during remote working in the COVID-19 pandemic, the outcome of this survey could be transposed to other unforeseen circumstances when working from home is required. Despite all adversities, for a number of people, the lockdown has offered an opportunity for personal development, discovering new opportunities and new ways of professional growth, considering working from home the bright side of the lockdown.


Being involved in one's care is prioritised within UK healthcare policy to improve care quality and safety. However, research suggests that many older people struggle with this.We present focused ethnographic research exploring older peoples' involvement in healthcare from hospital to home.We propose that being involved in care is a dynamic form of labour, which we call ‘involvement work’ (IW). In hospital, many patients ‘entrust’ IW to others; indeed, when desired, maintaining control, or being actively involved, was challenging. Patient and professionals' expectations, alongside hospital processes, promoted delegation; staff frequently did IW on patients' behalf. Many people wanted to resume IW postdischarge, but struggled because they were out of practice.Preference and capacity for involvement was dynamic, fluctuating over time, according to context and resource accessibility. The challenges of resuming IW were frequently underestimated by patients and care providers, increasing dependence on others post‐discharge and negatively affecting peoples' sense and experience of (in)dependence.A balance needs to be struck between respecting peoples' desire/capacity for non‐involvement in hospital while recognising that ‘delegating’ IW can be detrimental. Increasing involvement will require patient and staff roles to be reframed, though this must be done acknowledging the limits of patient desire, capability,and resources. Hospital work should be (re)organised to maximise involvement where possible and desired.Our Patient and Public Involvement and Engagement Panel contributed to research design, especially developing interview guides and patient‐facing documentation. Patients were key participants within the study; it is their experiences represented. Consequently, inherent in the programme design, and this study's research question formulation, was a theoretically informed assumption that older people We felt that being open to different experiences and perspectives about involvement, while being committed to making improvements, would increase the likelihood of developing a person‐centred intervention, sensitive to the lived experiences and preferences of those we were seeking to help.2.1.1Community‐dwelling adults aged 75+ were the target study group as they are most likely to experience variability in care at transitions. End‐of‐life patients were excluded because they tend to have dedicated post‐discharge care pathways. Likewise, people being discharged to live in residential care were excluded as they were likely to experience different care at transitions to their community‐dwelling peers due to readily accessible postdischarge support.A total of 32 patients aged 76–99 years were recruited from six hospital wards across multiple specialities from three hospitals within two NHS trusts in Yorkshire, North of England .2.1.3Semi‐structured interviews were the primary means of generating data, supplemented by observations,Each contact with patients was recorded as a field visit (FV). One hundred and sixty FVs were conducted in total . The fewest number of FVs with a participant was three; the highest was nine. The timing of FVs varied according to patients' care journeys, but broadly occurred at admission, before/at discharge, shortly after discharge, several weeks post‐discharge, and 3 months post‐discharge and/or at readmission.Interviews were audio‐recorded, where possible. Observations were recorded through field notes. Researcher interpretation and key reflections were noted after FVs; these were used to provide contextual information during analysis.2.1.4Tacit analyses were done throughout the period of data collection by authors N. H., R. S. and L. H., who each reviewed their own data and met regularly throughout the project to discuss key ideas. Additionally, N. H. listened to voice recordings/read transcripts generated by each researcher. A thematic analysisKey ideas were organised by N. H. into categories and subcategories, followed by identifying patterns and relationships between these categories. Similarities and differences between categories were used to construct themes and subthemes and the relationships between them  to do ‘work’ too, including decision‐making, undertaking activities, and completing tasks. We consider the work that people do as, and on behalf of, patients to be the ‘labour’ of involvement, conceptualised in this paper as ‘involvement work’ (IW).For health care professionals (HCPs) to deliver care to patients, work needs to be done. That is, decisions need to be made, activities undertaken, and tasks need to be completed—often by multiple people, over time, and within different contexts. Care delivery work is, predominantly, visible and acknowledged We propose that IW has three dimensions—cognitive, emotional and instrumental . However, after moving wards, Pearl no longer knew where the toilet was, and this made it difficult to go to the toilet alone; moreover, staff on this ward encouraged Pearl to use a commode instead of walking to the toilet at the end of the ward . Then, during another ward move, Pearl's walking frame was misplaced, resulting in Pearl being unable to walk around independently at all (impossible IW due to lack of resources). Pearl rarely communicated any of her feelings or difficulties to others because she did not want to be ‘a nuisance’ (hidden IW). Moreover, Pearl's daughters told us how difficult it was to get enough information from HCPs to make necessary decisions and arrangements . Getting information required persistent chasing  and caused stress and frustration , none of which they communicated to Pearl because they did not want to worry her (invisible IW).Pearl's case is a good example of how IW undertaken by patients/relatives, and the resources required to enact this, can remain hidden from others. Consequently, unlike the work of HCPs, IW remained largely invisible to and unacknowledged by HCPs, patients, and families alike. The consequences of this were twofold. First, ‘entrusting’ IW was common. We found that because the hospital healthcare system was geared towards the visible and acknowledged work that HCPs do, this set up expectations about the roles and behaviours of healthcare staff and patients operating within the system: Most patients desired minimal involvement during their hospital stay, seeing much of the cognitive and instrumental work as the responsibility of HCPs and/or their families. Hospital processes seemed to tacitly support these expectations by promoting and prioritising care delivery work, and minimizing or failing to support opportunities for involvement.Second, we found that enacting IW required resources, which was also largely unacknowledged by staff and patients, although it was frequently articulated as an issue by relatives. Because the provision of and access to resources were variable and/or unequally distributed, doing IW was sometimes challenging, even when desired.3.2This involved actively or passively minimizing participation in one or more types of involvement and took two forms: outsourcing and delegating. Both forms were common within our cohort of patient participants. For some people, outsourcing and delegating were enduring experiences; for others, they were transient experiences, usually adopted during episodes of acute ill‐health.3.2.1for me’. This was often due to patient expectations about the role of HCPs as knowledgeable decision‐makers, capable care providers, and the people whose job it was to perform tasks in hospital. However, ‘choosing’ to outsource IW to HCPs was often an interplay between patient preference and ‘going along’ with usual hospital processes, which tended to undertake activities on behalf of patients as standard—for example, HCP kept and dispensed medication, even when patients usually managed this. Many patients were willing to accept this because they trusted hospital staff.I go along with it, it's the hospital, they know what they're doing. ‘Outsourcing’ involved handing over responsibility for IW to other people, primarily to HCPs. This approach was one of ‘do [task] I do as I'm told; I don't want to be a nuisance. The staff have got so much to do. However, sometimes, outsourcing activities became more about ‘compliance’ than a patient's desire to avoid doing the task themselves. This led patients to outsource IW to HCPs because they wanted to be ‘good patients’.3.2.2on my behalf’, and patients typically remained influential while delegating IW. For example, patients frequently informed family members of their preferences and relatives communicated these preferences to care providers; relatives often became proxies for patients. Sometimes family members explicitly acknowledged this role, describing themselves as ‘advocates’ for their relative. For most relatives, however, doing involvement activities on behalf of patients was undertaken as an obligation; their role as ‘delegate’ was treated matter‐of‐factly and often remained unacknowledged by both patients and their family members.‘Delegating’ was also a means of handing over responsibility to others. This was often partial and usually to unpaid caregivers, for example, relatives. This approach was one of ‘do [task] Entrusting IW to others was the most frequent and desired form of involvement in hospital and was supported by standard hospital care processes, within which hospital staff undertook many cognitive and practical aspects of involvement for patients as part of caring for them. However, desire to entrust IW to others was not static and it varied, primarily according to time and location Although there was some variation between wards, standard processes for managing and caring for patients were broadly similar across locations and allowed minimal room for individual patient preferences. Ward‐based environments were homogeneous, with limited scope for personalisation; for example, patients had almost no input on ward temperature, lighting, care schedules, and choice about food and drink provision was limited. This was a source of frustration for some patients, especially as they began to feel better or during lengthier hospital stays.Katherine became so frustrated by everything being done for her that she started handwashing her clothes, crockery, and cutlery in the sink in her room, despite staff telling her this was unnecessary. For Katherine, resuming activity was crucial to her self‐identity as an independent person.Another process common across wards was ‘falls prevention’. Most patients were considered by HCPs to be at moderate‐high risk of falling and reported being encouraged to remain in bed or seated at the bedside. After speaking to HCPs about this, a senior nurse said that while, ideally, they would enable patients to remain as active as possible, this was extremely resource intensive and they rarely had sufficient staffing levels to facilitate and support physical activity. Consequently, minimizing physical activity felt like the safest option for patients at risk of falling. Many participants were compliant, not wanting to be bothersome, or were worried about falling themselves. However, some patients actively chose to ignore instructions, for example, choosing to walk independently, even when encouraged or told they should sit down. For example, Ray (76) declined to use the wheelchair brought to him when he moved around the ward. HCPs were persistent in offering the wheelchair, despite Ray's confidence and ability in walking independently, and what was initially a ‘decline’ had to become a more active ‘refusal’.3.4Involvement was often resource intensive, frequently requiring knowledge and information, social support, and material resources  and it was problematic when these resources were not supplied. Conversely, active resource provision by HCPs appeared to improve peoples' experiences and facilitated them in managing their health/care post‐discharge. This included resources such as patient‐friendly written information about medications, which enabled people to check what they should be doing once at home or provided the basis for conversations with post‐discharge care providers.Alongside resources provided by others, the capacities and capabilities of patients themselves could be resources to doing or resuming IW. In particular, feeling confident communicating with HCPs seemed to be a key facilitator for active involvement for both patients and relatives, especially when seeking information, challenging/resisting processes that minimised involvement opportunities, and influencing decision‐making. Overall, we found that patients with access to multiple resources, that is, both their availability and the means to utilise them, were often more effective at maintaining or resuming IW according to their preferences and were more likely to have a positive influence on their care when they did choose to be involved.3.5Although maintaining IW was challenging during hospitalisation, it appeared to enable people to resume involvement more effectively post‐discharge than those who entrusted IW to others throughout their stay. Outsourcing, in particular, seemed to contribute to loss of confidence and deconditioning in undertaking activities. This sometimes meant that patients felt less able to manage at home than they had before going into hospital, especially initially. For example, one participant, Mary, attempted to resume her pre‐hospital activities, but had become deconditioned during her hospital stay, resulting in a subsequent fall at home and readmission to hospital. Conversely, we found that participants who maintained active involvement reported ‘getting back to normal’ sooner than people who had outsourced and delegated.Alongside maintaining capabilities, involvement also influenced subjective experiences of (in)dependence. Crucially, it appeared that congruence between desired and actual involvement was more important to perceptions of (in)dependence than levels of actual dependence. Mary, for example, was happy to outsource tasks and be reliant on others, but was desperate to maintain choice about where she lived; her sense of independence came through being involved in decision‐making about place of residence. It was this that constituted meaningful involvement for Mary. Conversely, Katherine retained autonomy regarding decision‐making and was influential in decisions about discharge planning. However, Katherine felt dependent on others because she wanted to be more involved in her practical care than she could be. Her subjective experience of independence was low because her actual levels of involvement did not match her desired levels.Lack of resource provision could also impact on post‐discharge experiences by minimising opportunity for involvement in hospital, with visible consequences for patients and staff—missing mobility aids increased reliance on staff to help patients mobilise, for example. However, some problems did not become apparent until patients left hospital and as such were likely to remain invisible to hospital staff, who may not be aware of issues unless problems were significant enough to trigger readmission. For example, having no understanding of new medication is not necessarily a problem while HCPs are dispensing it in hospital. However, once patients become responsible for this post‐discharge, lack of understanding can lead to unintentional medication noncompliance.Alongside consequences for patients, enacting or entrusting IW had an impact on both care providers and families. For HCPs, active involvement could save them time and reduce care delivery work. For example, patients going to the toilet independently meant that staff time was not needed to help patients. However, some people—especially relatives—felt that they were treated as a ‘nuisance’ by staff when they enacted IW or when they sought out resources for IW. Relatives, in particular, said that because information provision was minimal, they frequently had to seek this out. However, doing so often meant interrupting HCPs during tasks and some people said that staff tacitly communicated displeasure at such interruptions. Information flow was largely controlled and dictated by HCPs and people frequently struggled with this, feeling limited power to effect change or have an influence unless this was facilitated by HCPs.However, the power dynamics of IW should not be seen as unidirectional. By having the decision on whether to enact or entrust IW to others, patients were able to impact both positively and negatively on the care delivery work that HCPs did and the IW that relatives undertook. The power to say ‘no’ to doing IW was particularly potent; HCPs wanted to  to care for patients, and family members often felt obliged to provide time, energy, and any financial cost it took to undertake IW on their behalf. IW, then, is always an interplay between people and is often negotiated relationally and interactionally.4The findings of the study suggest that most participants were not actively involved in their care in hospital. While non‐involvement was largely desired during this time, it was also tacitly promoted by hospital processes, which automatically assumed responsibility for most tasks people normally engaged in. ‘Non‐involvement’, then, was often a kind of ‘collaborative accomplishment’ between HCPs and patients: from the point of admission, many patients wanted and expected to ‘outsource’ and ‘delegate’ their IW to others, while care delivered in hospital often failed to enable active patient involvement—even when desired—by doing ‘IW’ on behalf of patients. At times, this seemed to benefit both patients and care providers—patients wanted to be ‘looked after’ and staff wanted to care for patients in ways consistent with hospital processes, which implicitly supported non‐involvement. At times, shortages of care resources, especially staff, also lent itself to patients being uninvolved; some patients sensed that the most helpful role they could play was as a passive patient. Non‐involvement, then, was sometimes a type of ‘collusion’ between patients and HCPs. This may provide some short‐term ‘benefits’, but as noted, it can also result in longer term consequences, especially post‐discharge. These were infrequently anticipated by care providers or patients.Importantly, involvement preferences were dynamic, varying according to time and context, with some people expressing or demonstrating a desire to resume IW at a later point in their journey, especially post‐discharge. Moreover, the point of discharge marks the moment when patients become responsible for their IW again, because outsourcing cognitive and instrumental IW to HCPs is no longer possible outside a hospital setting. This happens whether resuming IW is desired or not. However, resuming IW was sometimes challenging, especially when people had outsourced/delegated to others, and were therefore out of practice; others lacked resources to be involved in their care. Consequently, opportunities for increasing involvement within this cohort may be difficult without adjusting patient expectations, implementing broader system changes, and ensuring adequate access to resources. A culture of non‐involvement can impact the patient's transition of care in ways often unanticipated by both HCPs and patients. Enhancing involvement may be challenging in hospital, but the consequences could be far‐reaching by enhancing experience and safety post‐discharge.and in the organisation of the work that goes on in hospitals. For example, patients who demonstrate some capability to do things while in hospital, but are resistant to doing them (preferring to outsource), can be encouraged, reassured, and motivated by staff to consider looking ahead to prepare for their forthcoming independence post‐discharge. Likewise, where staff recognise a patient's desire for autonomy in preparation for resuming life at home, they support rather than resist this. Other potential opportunities include altering hospital processes to facilitate greater involvement where possible, for example, increased patient involvement in medicines management,Increasing patient involvement is likely to require a shift in both expectations (of and about patients and HCPs) It is also important to recognise that ‘good’ patient involvement will not look the same for all people and that for some, non‐involvement  or delegated involvement may be the preferred approach. In these cases, facilitating greater involvement of relatives, where possible, could be beneficial. For other people, ‘passive’ forms of involvement, such as an understanding and acceptance of care and treatment plans, may be ‘adequate’.desire (to participate) proposed as a prerequisite of participation.Patient expectations have been identified as a key factor in determining participation, with patient ability to leverage, multiple resources and are therefore subject to unequal distribution. Importantly, these include peoples' capacities and capabilities. The concept of ‘patient activation’ has been used to describe the ‘knowledge, skills and confidence a person has in managing their own health and healthcare’; higher levels of activation are promoted as a means of improving health‐related outcomes.should be more active and effective managers of their health and health care’. In some ways, our study supports such a proposal. We found that the patients in this study most effective at exerting influence and enacting IW in ways meaningful to them were proactive; had existing relevant knowledge; were confident talking to HCPs; and/or were able to resist, challenge, or work around problematic organisational processes within multiple settings. However, we also found that few participants felt able to do these things, especially when unwell. Consequently, it may be useful to consider concepts such as ‘activation’ as a resource—which people may or may not have access or ability to leverage at a given time—rather than an attribute of an individual. In agreement with Sinding et al.,Alongside ‘desired non‐involvement’,and how willing HCPs are to recognise and acknowledge them. Thus, patient involvement is not only something determined by individual patients but is instead something that is mediated—positively or negatively—through interaction, especially with service providers as individual HCPs, and/or through organisational practices.Moreover, an individual's (high) level of activation may not be sufficient to enable them to actually undertake more active forms of IW. Shim,Importantly, being ‘involved’ is not only related to achieving particular ends, for example, deciding upon a course of treatment, managing medications, being active and mobile; it can also be crucial to a person's sense and experience of (in)dependence. Secker et al.if they can retain autonomy over the things that are important to them. Therefore, ‘meaningful’ involvement is not ‘one‐size‐fits‐all’; rather, it requires a person‐centred approach that takes account of a person's desires, ‘psychological make‐up, biography, social context and cultural heritage’,For some people, then, lack of involvement and reliance on others will be detrimental to independence, while for others, reliance on others will be consistent with being independent 5As with all research, our study has limitations. We recognise that observational methods and data generated within shared environments may introduce bias into findings. For example, people may change their behaviour while being observed. However, by spending extended periods of time on wards and with participants, we feel that people became comfortable around the researchers, enabling us to capture naturally‐occurring behaviour. We also believe that data generated by observational methods provide insights that go beyond verbal accounts and therefore have utility despite these limitations.We acknowledge that qualitative research is rarely representative, and our findings are therefore not generalisable to all older people transitioning from hospital to home. However, we believe that the in‐depth nature of the work, comprising multiple data generation methods, provides findings that are credible, dependable, and contribute to research in this area. Moreover, our project patient and public involvement groups have repeatedly reviewed the findings at various stages of data collection and analysis. They felt that we captured important themes and perspectives, many of which mirrored their own experiences of being community‐dwelling older adults, all of whom had experienced transitions of care from hospital to home, suggesting transferability of our findings.6Receiving and being involved in care often require patients and families to engage in ‘work’ that remains largely hidden and unacknowledged. Multiple factors influence the involvement that people desire and enact, including patient characteristics, relational dynamics, resource availability, interactions with others, and system processes. However, in hospital, many people ‘entrust’ IW to others and struggle to resume activities. This can result in increased reliance on people and services post‐discharge, alongside a diminished sense of independence. Enhancing involvement could contribute to positive patient experience and safety. Doing so will require encouraging IW when people are reticent, facilitating IW when people show willingness and desire, and resourcing IW to ensure that burden is minimized and inequalities are not aggravated.The authors declare that there are no conflicts of interest.All authors declare that they made substantial contributions to (a) the conception and design, or analysis and interpretation of data; (b) the drafting of the article or revising it critically for important intellectual content; and (c) approval of the version to be published.