Participant characteristics
There were sixteen participants in this study; nine were informal caregivers, and seven were older adults. Each of the two groups contained English and Hebrew-speaking participants and participants from different regions in Israel—Tel Aviv metropolitan, Jerusalem, and periphery regions. All the participants had been recently discharged (less than a year). The mean age of older adults was 69 years, and for informal caregivers was 53 years. Four of the seven older adults were male, while two of the nine informal caregivers were male. Informal caregivers' relationships with older adults range from a spouse, child, in-law, or grandchild. Years of caregiving experience reported by the informal caregivers was 0–5 years (n = 5), 11–15 years (n = 1), and 20 years or more (n = 3). Many of the participants were on short stay admissions from 2 days being the least to 30 days being the most. The mean hospital stay was 7.5 days. Reasons for hospital admission included cardiovascular (n = 6), gastrointestinal (n = 1), orthopedic (n = 2), neurological (n = 2), respiratory (n = 1), vascular (n = 2), infectious (n = 1), and traumatic (n = 1). Participant characteristics are detailed in Table 1. [Please insert here]
Table 1
Participant characteristics
Participant category | N = 16 |
Older adult | N = 7 |
Gender | |
Male | 4 |
Female | 3 |
Mean age (years) | 69 |
Range of duration of hospital stay (days) | 3–7 |
Region | |
Central & Tel-Aviv | 5 |
Jerusalem | 1 |
Southern | 1 |
Education | |
High school/Postsecondary | 3 |
University | 4 |
Employment status | |
Working for pay (full or part-time) | 3 |
Retired | 4 |
Reason for hospital admission | |
Cardiovascular (Heart attack, bypass surgery, cardiac catheterization) | 3 |
Gastrointestinal (bowel obstruction) | 1 |
Neurological (Cerebral stroke) | 1 |
Respiratory (lung resection) | 1 |
Orthopedic (Knee replacement surgery) | 1 |
Informal caregivers | N = 9 |
Gender | |
Male | 2 |
Female | 7 |
Mean age (years) | 53 |
Range of duration of hospital stay (days) | 2–30 |
Region | |
Central & Tel-Aviv | 5 |
North | 3 |
South | 1 |
Education | |
High school/Postsecondary | 1 |
University | 8 |
Employment status | |
Working for pay (full or part-time) | 7 |
Retired | 2 |
Relationship with older adult | |
Child | 5 |
Spouse | 2 |
Grandchild | 1 |
In-law | 1 |
Reason for hospital admission | |
Cardiovascular (Peacemaker, Heart valve replacement, Stroke, Heart failure) | 4 |
Neurological (Vertigo) | 1 |
Respiratory (Smoke inhalation from house fire) | 1 |
Orthopedic (Hip surgery) | 1 |
Infectious (liver infection) | 1 |
Vascular (Vascular catheterization in the leg) | 1 |
Figure 1 provides a layout of the main themes and sub-themes discussed in subsequent sections below. Theme 1 focuses on describing the negative and positive experiences highlighted by participants as they navigated hospital-to-home transitions, from hospital care to discharge and post-discharge. Theme 2 describes the challenges participants encountered as they navigated hospital-to-home transitions. Sub-themes explored here are issues of care coordination and person-centered attention, bureaucratic hurdles, and caregiver burden and responsibility. Finally, the third theme describes opportunities identified for optimizing experiences of hospital-to-home care transitions. They include individual autonomy and self-advocacy, involvement in transitional care decision-making, and strengthening collaborations and partnerships between hospital and community.
1. Navigating hospital-to-home transitions
Our findings revealed negative and positive experiences of navigating hospital-to-home transitions during care, discharge, and post-discharge. Negative experiences were characterized by feelings of isolation and self-reliance, abrupt discontinuity of care, and lack of ongoing support and guidance. On the other hand, positive experiences were characterized by feelings of reassurance and empowerment, a sense of security due to the presence of a medical team during care, and positive experiences of follow-up care through phone calls and home visits. The older adults and informal caregivers shared diverse perceptions of their care experiences during transitions from hospital to home settings. Some described their transition as smooth and positive during their hospital stay, at discharge, and upon returning home, while for some, experiencing a sudden health crisis and then returning home, where life is expected to resume as normal, can be incredibly distressing.
“I received intensive neurological care there. The attending physician assumed full responsibility for my case, evidently concerned about preventing further complications. While a hospital provides a sense of security due to the presence of a medical team, it is not a pleasant place to be, and the transition home brings with it a sense of isolation and self-reliance”. Older adult
Thus, medical oversight provided during hospital stays provides a sense of security; however, adjusting to post-discharge life and managing their care independently creates isolation. Another older adult linked the transition to a transactional experience characterized by abrupt farewells and a lack of ongoing guidance or support. Another older adult echoed this sentiment and described feeling frustrated and disheartened by the perceived lack of genuine care and support post-discharge.
“It felt quite abrupt and impersonal, ‘OK, goodbye...next! My experience was far from simple, transcending a mere physical injury. Upon returning home, I was beset with questions about permissible activities, necessary lifestyle modifications, and overall future conduct. Initially, I found myself consulting various medical professionals on a daily basis, including a cardiologist and an internal medical specialist”. Older adult
Participants expressed disappointment with the perceived discontinuity of care once their immediate medical needs were addressed, emphasizing the importance of ongoing support and follow-up beyond the hospital setting.
“I needed someone to advise me on the right course of action and assess whether I was proceeding correctly…There lacks a single entity who can oversee and coordinate my ongoing care.” Older adult.
Furthermore, the discharge process was mainly characterized by receiving a discharge letter from the hospital staff, whereas a more relaxed process of understanding discharge instructions and receiving adequate information would have been more desired.
“…At the time of discharge, I received merely a letter instructing me to refer to it for information, which was all the guidance provided.” Older adult.
Conversely, other participants reported feeling reassured and empowered. Detailed written guidelines, medical professionals' contact information, and healthcare home visits were cited as valuable resources that facilitated the transition and reduced the need for additional travel or logistical arrangements.
“It was reassuring to receive clear guidance and support. Additionally, I was given detailed written guidelines about dietary recommendations, including what foods to consume, what to avoid, and guidelines for healthy and unhealthy eating choices. Furthermore, they provided me with the contact number for the department of the professor who performed the surgery, should I have any questions”. Older adult
Other expressions of positive experiences focused on receiving appropriate support at the appropriate time e.g.,
“It instilled a feeling of confidence, reassuring us that we were receiving the appropriate support precisely when it was most needed.”- Informal caregiver
“With regard to transition, I had very, very good treatment. The doctor came, he explained every single thing, with regard to showers, with regard to exercises, who would be in touch with me, who wouldn't be in touch with me, very, very positive, and he was very, very nice.” Older adult
Overall, the responses highlight the varied experiences and perceptions of older adults and informal caregivers during hospital-to-home transitions, underscoring the need for comprehensive and patient-centered approaches to post-discharge care to ensure the well-being of both patients and caregivers throughout the transition process.
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Challenges of hospital-to-home transitions.
Challenges were expressed under three main sub-themes: 1) Care coordination and person-centered attention, 2) bureaucratic hurdles, and 3) caregiver burden and responsibility.
a. Care coordination and person-centered attention
Older adults and informal caregivers expressed frustration with the lack of coordination among specialists, leading to confusion regarding medication, treatment plans, and follow-up care.
“I perceived no significant preparations. I received a discharge letter outlining recommended follow-up actions and necessary tests. These tests require independent scheduling and are often at various locations, which can be challenging. Despite lifelong health insurance contributions, securing timely appointments is difficult. For instance, I received a referral for an additional MRI appointment set for six months from now.” Older adult
The absence of personalized attention and support during the discharge process contributes to feelings of anxiety and uncertainty and a sense of being left to fend for themselves. They often felt like they were left to navigate their healthcare journey alone, with little guidance or reassurance from medical professionals. This fragmented approach to healthcare management can exacerbate patients' concerns and diminish their overall satisfaction with the healthcare system. Furthermore, they expressed frustration with the lack of attention to their individual needs and concerns, feeling like they were treated as just another case rather than receiving tailored guidance and assistance. Older adults and informal caregivers reported desiring more attention, communication, and follow-up from healthcare providers to ensure a smoother and more supportive transition back home.
“It was kind of aggravated for her, for me, all the questions that we had and no answers. It felt like, okay we have plenty of patients here. You are not the only one. That was the feeling we got. On top of that, that she was elder, and it felt like they were giving her very fast answers and not really taking the time to explain and so on. it was it is kind of a bad experience.” Informal caregiver
“I felt treated as just another customer in the queue. The greatest challenge arises when you're discharged from the hospital, metaphorically thrown into turbulent waters to fend for yourself, carrying the burden of uncertainty about when a potential health crisis might reoccur - be it in a week, a month, or a year” Older adult.
Participant expressed dissatisfaction with the uncertainty surrounding diagnoses, treatment plans, and follow-up care. They highlighted the need for healthcare providers to offer clear explanations, timely answers, and comprehensive support to alleviate anxiety and ensure better patient outcomes. Additionally, they expressed a desire for healthcare professionals to take more responsibility for providing transparent information and guidance to patients and their families.
Difficulties and frustrations experienced specifically during the hospital discharge process were also highlighted. Participants expressed concerns about delays in receiving discharge instructions, difficulties understanding the discharge letter, and a lack of personalized guidance regarding post-discharge care. They emphasized the need for clearer communication from healthcare providers, including detailed explanations of medications and follow-up instructions. Additionally, they stressed the importance of having someone available to address their questions and concerns before leaving the hospital. Delays in the discharge process, uncertainty about post-discharge care, and insufficient preparation contribute to feelings of anxiety and dissatisfaction among patients and caregivers were highlighted.
“The discharge letter was supposed to contain all necessary information, but no one was available for a detailed discussion or to answer questions.” Older adult
“The doctor briefly handed me the letter, offering minimal explanation, approximately four to five words, and advised me to consult my GP for further guidance.” Older adult
b. Bureaucratic hurdles
Bureaucratic hurdles in accessing healthcare assistance, especially during and post-discharge were equally a significant challenge. Older adults, especially those with less social support, struggled with navigating bureaucratic processes to access healthcare assistance, particularly when seeking support such as home care or nursing assistance, ,or government aid. Participants expressed frustration with the cumbersome paperwork, lengthy procedures, and lack of streamlined processes, which hinder their ability to obtain the necessary assistance promptly. They emphasize the need to simplify administrative requirements and advocate for dedicated teams or organizations to facilitate access to support services, especially for elderly individuals and those with serious health conditions. Additionally, there's a call for a more efficient assessment of patient's needs to ensure timely assistance and minimize unnecessary delays caused by bureaucratic hurdles.
“Sometimes there's a lot of bureaucracy. They say, oh, okay, well, it'll take a month. by the time the papers go through, and by the time this and in the meantime, the patient's dying at home and needs her diapers changed, and it is not fair”. Older adult
“I would like to manage it together with them but the bureaucracy in Israel is so difficult that you don't always have the strength. And when you are in pain and after surgery, then to deal with it is a job that I would prefer someone do for me; but I would like to make the decisions myself”. Older adult
c. Caregiver burden and responsibility
Finally, struggles of family caregiving and the need for external support were equally highlighted by informal caregivers.Informal caregivers play a crucial role in the care and transition of older adults from hospital to home; thus, recognizing and addressing the needs of family caregivers is essential for ensuring their well-being and ability to provide effective support to older adults during the transition process. They emphasized some of the challenges faced by family members in providing care for a seriously ill loved one, particularly in the absence of external support such as home care or nursing assistance, the emotional and physical toll of caring for their sick loved ones, highlighting the burden placed on the entire family, especially when balancing caregiving responsibilities with other commitments like work and family. The importance of accessible and affordable assistance, particularly for elderly caregivers who were physically exhausted by their caregiving responsibilities, whether through home care services or financial support from institutions like National Insurance, to ease the burden on families during difficult times was highlighted.
“It demands immense responsibility on my part, particularly in the meticulous management of his medication regimen. I am tasked with preparing and overseeing the accurate and timely administration of his medications, as any omission may lead to severe consequences.” Informal caregiver
Informal caregivers of older adults faced significant challenges during the hospital-to-home transitions of their loved ones. The caregivers described the demanding nature of providing around-the-clock care for their sick family members. The caregiving responsibilities often fell on multiple family members, leading to a constant rotation of caregiving duties.
“Most of the days we had turns, like, who's gonna sleep with her at home and who's gonna stay with her… around the clock, we were there… we didn't have any nurse or a woman that come or anybody that come to take care of her. It was all our responsibility. It was a very hard obligation.” Informal caregiver
The emotional toll of caregiving was also evident, with caregivers experiencing stress, anxiety, and emotional distress throughout the transition period.
“The entire family experienced considerable stress during this period. From the moment I returned home, my wife was constantly by my side, accompanying me to every medical appointment and examination. She remained with me continuously, sharing in the stress and anxiety and eager to understand the unfolding situation.” Older adult
Overall, the challenges encountered by informal caregivers underscore the need for comprehensive support services to assist caregivers during hospital-to-home transitions and alleviate the burden of caregiving responsibilities on families.
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Opportunities for optimizing hospital-to-home transitions.
This theme highlights opportunities for maximizing transitions. By identifying opportunities for optimization, we seek to contribute to support systems that promote seamless transitions and improve outcomes for older adults and their caregivers during the transition from hospital to home settings. Findings show that individual autonomy and self-advocacy, involvement in collaborative transitional care decision-making, and hospital and community collaboration and partnerships are opportunities that may be leveraged for optimizing hospital-to-home transitions. These sub-themes are discussed in detail below.
a. Individual autonomy and self-advocacy
Findings from this study show that the desire for individual autonomy and self-advocacy among older adults and family caregivers during hospital-to-home transitions presents an opportunity for optimizing and improving care transition experiences and outcomes. Empowering them to actively engage in decision-making, express preferences, and advocate for their needs may further enable healthcare providers to tailor transition plans to suit their values and preferences better. Our findings show that some older adults and family caregivers expressed a strong sense of independence and self-sufficiency, preferring to manage their care autonomously whenever possible, feelingreluctant to rely on others for assistance, emphasizing a desire to maintain self-reliance even during periods of difficulty.
“A few years ago, when he had bypass surgery, before his discharge his surgeon told us that he could go to heart rehabilitation. I knew that wasn't for (him) and I asked the doctor what he thought, and he said 'it's subjective, when someone does not have family support they have to go to rehab, no question, but when someone has family to support them, I believe that the best place for a person to heal is in their own home.” Informal caregiver
Our findings also highlighted some participants’ proactive approach to healthcare, actively seeking information and asking questions to ensure a thorough understanding of their medical needs and treatment plans. This proactive stance enabled some participants to navigate the healthcare system effectively and advocate for themselves during hospitalization and upon discharge. These personality attributes underscore the significance of tailoring transitional care interventions to align with individuals' preferences, attitudes, and behaviors, thereby enhancing their ability to successfully transition from hospital to home while maintaining a sense of autonomy and agency. Additionally, they highlighted the importance of being well-informed about their health condition and treatment, actively engaging with healthcare providers, and asking pertinent questions to ensure clarity and understanding.
“I always ask questions. I don't bury my head in the sand; I research, I take an interest, and I always ask all the questions. I'm not shy about asking the doctor questions… I knew to ask the questions because I knew that the doctors usually give a general sort of answer or they let the nurses give you the instructions for what to do when you go home: which pills to take, how many times a day, and when to visit your local health care providers.” Informal caregiver
b. Involvement in collaborative transitional care decision-making
Our findings show that engaging older adults and families in the decision-making process may allow for a comprehensive understanding of the older adult's needs and preferences, leading to more personalized care plans. This underscores the importance of family involvement, patient preferences, and caregiver support in healthcare transitions, highlighting the need for collaborative decision-making to ensure better outcomes. Our findings illuminate that some participants expressed a desire for active participation in healthcare decisions, particularly regarding treatment options and post-discharge plans. They highlighted the importance of considering individual preferences and needs and the role of family support in decision-making. Some participants described proactive engagement with healthcare providers, advocating for personalized care and treatment adjustments based on their own assessments and experiences,
“To make the transition easier,… the loved one the daughter or the granddaughter or whoever, should also, the nurses and doctor should explain to the family because sometimes, as I said before, the patient doesn't always understand. Especially if we are going for older, much older people, they don't understand… it is important that the family know exactly what's going on. It makes the transition easier…” Older adult
while some others were content relying on the healthcare professionals' judgment.
“I believe it is best for medical professionals to make these decisions. If they recommend discharge, I trust their judgment. At my age, it is not fitting to challenge their expertise”. Older adult
Overall, empowering older adults and family caregivers to participate in decision-making processes actively offers a promising avenue for enhancing hospital-to-home transitions of care and improving overall health outcomes. On the flip side, our findings reveal that the desire for active involvement of older adults and their informal caregivers in transitional care decision-making can sometimes be hampered by health conditions, bureaucratic hurdles, and challenges within the healthcare system.
“If feasible, despite my limitations owing to post-operative pain and physical weakness from the surgery, I would have been eager to contribute. Nonetheless, the immediate post-operative period is challenging due to the effects of substantial pain medication, which weakens the body”. Older adult
“I would have been happy for her to have stayed longer, that way I would have been more relaxed. I asked if they didn't need to keep her in and they said there was no reason to keep her, because what they were doing for her there could be done at home.I had no say in the matter”. Informal caregiver
“I wanted my father to have a say in that too. Um. he's clear in his mind and, and whatnot, but, you know, after certain major health events, you know, you, you don't always think clear and you're afraid.” Informal caregiver
c. Strengthening hospital and community collaboration, coordination, and partnerships
Since hospital-to-home transitions are often complex, involving multiple healthcare providers, caregivers, and community support services, a seamless transition requires effective communication, collaboration, and coordination between these stakeholders. Collaboration between hospitals and community organizations can enhance access to support services for patients transitioning home.
“I think that for anyone who has been hospitalized for a certain period, the health system has to follow up with them much more through the nurses or require the family doctor to initiate contact with the patient, because often if you don't go afterward to the family doctor and bring him the discharge, letter, they don't even know you were hospitalized.” Older adult
Strengthening these collaborations allows for more effective follow-up and home care support and highlights proactive measures that can be taken to ensure patient well-being and the role of supportive community frameworks in facilitating a smooth transition to home-based care.
“The fact that the house was organized and ready for the person coming back from the hospital is something that has a positive impact on the patient. It feels like he's back where he belongs, and that makes him comfortable.” Informal caregiver