Exploring the lived experience of loneliness and social isolation in informal palliative caregivers: A systematic review

A Rapid Review of the Detrimental Impact of Loneliness and Social Isolation in Caregivers of Older Adults

The study aimed to characterize and understand the difficulties experienced by informal caregivers from a bio-psychosocial and environmental perspective, taking into account the socio-demographic and health characteristics of the informal caregiver and the person cared for, quality of life, perceived burden, social support, and the impact of the COVID-19 pandemic on the informal caregiver and the person cared for. The participants were 371 informal primary caregivers, 80.9% female, aged between 25 and 85 years, mean 53.17 (SD = 11.45) years. Only 16.4% of the informal caregivers benefited from monitoring and training for informal caregiver skills; 34.8% received information on the rights of the person being cared for; 7.8% received advice or guidance on the rights and duties of the informal caregiver; 11.9% of the caregivers benefited from psychological support; and 5.7% participated in self-help groups. A convenience sample was used, and data were collected via an online questionnaire. The main findings show that the major difficulties experienced by caregivers are related to social constraints, the demands of caring, and the reactions of the person cared for. The results reveal that the burden of the main informal caregivers is explained by the level of education, quality of life, level of dependence of the person cared for, level of difficulties, and social support. The COVID-19 pandemic impacted caregiving by increasing the perceived difficulty of accessing support services, such as consultations, services, and support; causing distress feelings in the caregiver, such as, anxiety and worry; increasing the needs and symptoms of the person cared for; and increasing the degree of isolation, for both, the informal caregiver and the person cared for.

QUESTION Question: Do social isolation factors and feelings of loneliness predict an increased risk of mortality in older people, and does this relationship differ between men and women? Population: 4004...

Informal caregivers (ICs) frequently face stressful events and have many caregiving responsibilities. Further, they have their basic requirements and continuously face comprehensive care needs (CCN) and unmet needs (UNs) in addition to meeting the needs of patients with cancer. This study aimed to describe the CCNs among the ICs of patients with advanced cancer in palliative care at the Apeksha Hospital, Maharagama, Sri Lanka. This cross-sectional study incorporated 422 ICs using a convenient sampling technique; an interviewer-administered questionnaire collected information on socio-demographic and clinical characteristics. A 35-item validated Comprehensive Needs Assessment Tool (CNAT-ICs) was used to assess the unmet CCNs (UCCNs) of seven domains. A five-point Likert scale was used (1 = no need to 5 = high need) for scoring (possible range 35–175). Higher scores indicated higher UNs. Data were analyzed using descriptive and inferential statistics. Of the sample, 51.4% were female. The mean (± SD) age of the ICs was 43.13 (± 14.92) years. ICs’ mean (± SD) total UCCNs was 92.54 ± 29.48. ICs had the most need in the healthcare staff/nurses’ support needs and information domain (26.20 ± 10.44), followed by social and family support (17.07 ± 7.27), psychological (15.52 ± 7.99), hospital facilities/ service (13.22 ± 5.34), medical officers’ support (9.46 ± 4.14), spiritual/Religious support (5.89 ± 2.80), and physical/practical (5.11 ± 2.29), respectively. Several variables of ICs, such as working status, financial and emotional strain, care levels, self-reported general health, and perceived social and family/friends support, were reported as significant factors. These ICs reported relatively lower overall UCCNs, while the study showed the UNs of ICs were high in the healthcare staff/nurses’ support and information, and essential to consider associated caregiver and caregiving-related variables to minimize UCCNs. The results would help the health authorities understand the current status of UCCNs among ICs from different socio-economic backgrounds in Sri Lanka, recommending future support and involvement with family members in patient care, and especially providing information.Supplementary InformationThe online version contains supplementary material available at 10.1038/s41598-025-26469-0.

Social Disconnection in Late Life Mental Illness – Commentary From the National Institute of Mental Health

Purpose Up to 1 million lesbian, gay, bisexual, and transgender (i.e., sexual and gender minority, SGM) individuals in the United States have histories of cancer. This medically underserved population is diverse, with complex sexualities and gender identities, and distinct health concerns. SGM persons experience disproportionate risks for, and rates of, anal, breast, cervical, colorectal, endometrial, lung, and prostate cancers, in addition to cancers affecting transgender persons who have undergone sex-reassignment. SGM individuals are linked by shared experiences of stigmatization as a minority population for which little cancer research has been conducted. SGM cancer patients frequently report reluctance to seek healthcare, have poorer outcomes following diagnosis, engage in elevated risk behaviors (i.e. smoking and alcohol use) even after cancer diagnosis, have difficulty making emotional adjustment to illness, and experience higher rates of psychological distress. They report less satisfaction with cancer care, deficiencies in patient-centeredness and shared decision-making, gaps in care, and social isolation. Minority stress resulting from experiences of anti-SGM sentiment and discrimination affects cancer patients and their informal cancer caregivers. Our paper presents findings from a pilot study to identify gaps and opportunities to improve cancer care for SGM patients and caregivers at the University of New Mexico Comprehensive Cancer Center. Methods Between June 2020 and July 2021, we used a multi-methods research design informed by ecological theory to collect qualitative and quantitative data regarding cancer patient and caregiver quality of life (QoL) and experiences of cancer and survivorship care. We used PROMIS measures distributed via REDCap to assess QoL (i.e., fatigue, pain interference, pain intensity, anxiety, depression, emotional support, social isolation, and companionship), and conducted in-depth semi-structured interviews. We recruited 10 SGM cancer patients and 8 heterosexual, cisgender (H/C) patient matches, and their self-identified informal cancer caregivers (n=36, dyad total n=18). Interviews ranged from 1 to 2 hours, were audio-recorded and transcribed for analysis. The study was approved by the University of New Mexico Human Research Protections Office Institutional Review Board. Results Results of the PROMIS QoL assessments indicated that SGM patients reported greater anxiety [mean (SD) = 54.5 (8.8)] and depression [mean (SD) = 49.3 (4.8)] than H/C patients [mean (SD)=51.6 (7.5) and 45.4 (6.8) respectively], while heterosexual, cisgender (H/C) patients reported higher fatigue [mean (SD) =52.04 (8.18)] and stronger pain intensity than SGM patients [mean (SD)=48.3 (9.1) and 37.8 (9.1) respectively]. SGM patients reported higher levels of social isolation [mean (SD) = 48.3 (7.3) vs. 42.1 (7.4) for H/C patients, whereas H/C patients reported more emotional support (mean (SD) =57.5 (9.3) vs. 53.0 (6.9)] and companionship [mean (SD) = 55.2 (8.6) vs. 51.5 (11.0)]. SGM and H/C differences in caregiver QoL were most notable with regards to higher levels of fatigue [mean (SD) = 47.1 (6.0) for SGM, and 42.4 (11.5) for H/C] and companionship [mean (SD) = 55.3 (6.0) for SGM, and 50.9 (5.5) for H/C]. Qualitative interviews supported our quantitative results. SGM patients and caregivers articulated experiences of anti-SGM stigma and discrimination contributing to minority stress that influenced their initial cancer care encounters. SGM dyads had more trepidation and/or medical mistrust during initial cancer care encounters when compared to H/C patients and caregivers. SGM patients questioned care that was not culturally responsive to SGM preferences, while H/C patients were more apt to identify gaps in communication and perceived lack of clarity regarding cancer care delivery. Although SGM patients experienced high satisfaction with their cancer care once they developed trust with their providers, they discussed desires to have more direct conversations with their oncologists about their sexual orientation and gender identities and sexual health. All patients and providers in the study (SGM and H/C) appreciated their oncology care teams. All patients and caregivers relied on social networks comprised of friends and family, although SGM patients and caregivers had smaller social networks and relied less on biological family, and single SGM individuals experienced challenges accessing cancer care and struggled with social isolation. We discovered too, that all caregivers, regardless of Sexual Orientation and Gender Identity (SOGI), perceived a lack of support and information pertaining to their loved one’s treatment, side effects and best way to provide care. Conclusions This study demonstrates that prior stigmatizing experiences contribute to minority stress and medical mistrust for SGM cancer patients and their informal caregivers across the cancer care experience. Findings point to specific gaps in SGM cancer patient care, including lack of conversation about patient SOGI, inadequate staff and oncology provider SGM specific knowledge and cultural competence/cultural humility training, and insufficient patient supports for those who lack social support during cancer care treatment. Further, this study reveals inadequacies in SGM specific support, and overall support services for informal cancer caregivers. Additional research is required to develop targeted interventions to address minority stress and clinic environment concerns to improve cancer care for SGM patients. Importantly, while there were differences between SGM and H/C experiences of cancer treatment, significant similarities also emerged. Caregiver expressed consensus about the current lack of support and guidance for informal caregivers of cancer patients. Future work should focus on providing caregiver-specific resources in the clinic setting and facilitating support groups for caregivers to network with one another, as well as for tailoring SGM specific caregiver support services. Our findings highlight areas for improving cancer care for the SGM community, as well as a broader population of patients and caregivers.

Background/Objectives: Informal caregivers (ICs) are the backbone of home-based palliative care (PC) because they play a vital role in offering more seamless and timely support, preventing suffering and fostering comfort and dignity. Specialized home-based PC teams must recognize ICs' unmet needs in fulfilling daily responsibilities and enhance their preparedness for caring. In this vein, this study aimed to carry out the following: (a) explore how PC professionals perceive the preparedness of ICs to provide PC at home and (b) determine what barriers and enablers they consider essential for the delivery of high-quality PC at home. Methods: Using purposeful sampling, thirty-four professionals from four disciplines who worked in specialized PC teams were recruited for a descriptive qualitative research study. Four focus group discussions were conducted from September 2024 to January 2025. This was followed by a thematic analysis according to Braun and Clarke's framework. The findings are reported following the COREQ checklist. Results: Most of the participants were female nurses (n = 22) with a mean age of 41.8 ± 8.62 years. Three overarching themes were identified: (1) IC needs and motivations for providing care; (2) perceived barriers to good-quality palliative home care; and (3) perceived enablers of good-quality palliative home care. The IC's preparedness depends on personal characteristics, health status, the scope of tasks, and the ramifications stemming from the complexity of the illness trajectory. Conclusions: Professionals deemed it essential for PC staff to be experienced, accessible, person-centered, and proactive. Furthermore, effective communication and a well-defined network for requesting certain community resources or services were deemed crucial for delivering high-quality PC at home.

Informal caregivers, mainly family members and friends, provide supportive and palliative care for people with amyotrophic lateral sclerosis (ALS) during their terminal disease course. Informal caregiving for people with ALS continues towards palliative care and end‐of‐life care with the progression of the disease. In this study, we provide a theoretical understanding of informal caregiving in ALS utilising 23 semi‐structured interviews conducted with informal caregivers of people with ALS (pwALS) in Switzerland. Due to the expected death of the care recipient, our grounded theory approach outlines informal caregivers’ caregiving work as an effort to secure a balance amongst different caregiving activities, which feed into the final stage of providing palliative care. Overall, our theoretical understanding of ALS informal caregiving work encompasses the core category ‘holding the balance’ and four secondary categories: ‘Organising support’, ‘being present’, ‘managing everyday life’ and ‘keeping up with ALS’. The core category of holding the balance underlines the significance of ensuring care and normalcy even as disease progresses and until the end of life. For the informal caregivers, this balancing act is the key element of care provision to pwALS and therefore guides decisions surrounding caregiving. On this understanding, those caregivers that succeed in holding the balance can provide care at home until death. The balance is heavily influenced by contextual factors of caregiving, for example relating to personal characteristics of the caregiver, or activities of caregiving where the goal is to ensure the quality of life of the pwALS. As there is a heterogeneity of speed and subtype of progression of ALS, our work accounts for multiple caregiving trajectories.

IntroductionA greater dependency on informal home-based caregivers to assist patients in their homes stems from Rwanda’s rising palliative care needs and the burden of terminal illnesses. These caregivers play a critical role in addressing patients’ physical and emotional needs and assisting with daily activities. However, in low-resource settings like Rwanda, limited attention has been given to understanding their lived experiences and the challenges they face. This study primarily aimed to explore the lived experiences and caregiving challenges of informal home-based caregivers providing palliative care. A secondary aim was to describe the range of life-threatening conditions being managed at home under their care.MethodsA qualitative descriptive study design was used to gain in-depth insights into the common palliative conditions managed at home, the caregiving practices employed, and the challenges experienced by informal caregivers. Twenty (20) participants were purposively selected from Nyamasheke and Rusizi districts in Rwanda, all of whom were providing home-based care to terminally ill patients. Data were collected through in-depth individual interviews and analyzed thematically using open coding in Atlas.ti software.ResultsInformal home-based Caregivers managed an assortment of chronic and life-threatening illnesses, assuming challenging responsibilities like medication administration, wound care, mobility assistance, and emotional support. Analysis revealed a hierarchy of interrelated themes reflecting the multifaceted challenges of caregiving. These included Caregiver Burden, Financial and Material Constraints, and Structural and Systemic Challenges, each underscoring the intense physical, emotional, and logistical demands Informal home-based caregivers faced. Additional themes such as the Lived Experience of Illness, Coping Mechanisms, and Community and Informal Support highlighted how caregivers navigated these pressures, often with limited guidance or resources. Finally, the theme of Recommendations for Support emerged, offering insight into potential interventions to better assist caregivers. These themes were consistent across caregiving contexts, regardless of the specific illness involved.ConclusionUnspecified wound cancer with multiple chronic diseases and advanced illnesses together with hypertension and stroke complications are among the major palliative conditions reported and managed at home. Informal home-based caregivers face substantial responsibilities and numerous challenges during the provision of palliative care at home. Caregiving in this context remains undervalued and under-supported. There is an urgent need for targeted support systems and policy reforms to strengthen home based caregiver to improve the quality of life of home-based caregivers in Rwanda.

Informal caregiving for a person living with glioma can be both rewarding and multidimensionally challenging, given the potential for debilitating symptoms, cognitive impairment or personality changes, as early as diagnosis. There is growing evidence that, due to the demands of care, experiences and feelings of loneliness and isolation among informal caregivers are widespread, and opportunities for quality or meaningful social connectedness are lacking. While considerable research has quantified the causes and effects of loneliness and isolation in informal care contexts, the lived experience of loneliness has received relatively little attention. The aim of this study was to better understand the everyday experiences of a group of home-based informal caregivers of people living with glioma in Queensland, Australia. Drawing on in-depth interviews with 32 informal caregivers, purposively sampled, and recruited through a tertiary hospital, in this paper, we explore how the various experiences, demands, and social and relational dynamics in/of informal care (re)produce forms of isolation and loneliness. Using the framework approach to thematic analysis, we derived four themes: (a) the 'need' to be near the care recipient, and the implications for caregiver mobility; (b) the strong sense of responsibility for care, and the virtues of 'good' caring; (c) experiences of loneliness in the company of others and (d) postponement of social connection and minimising the self. The findings, we argue, are reflective of broader social and moral norms and expectations within experiences of home-based informal care.

Loneliness in the time of COVID-19: Impact on older adults.

Informal care provided by family members is an essential feature of health care systems worldwide. Although caregiving often begins early in the disease process, over time informal caregivers must deal with chronic, debilitating, and life-threatening illnesses. Despite thousands of published studies on informal care, little is known about the intersection of informal caregiving and formal palliative care. The goal of this review is to identify research priorities that would enhance our understanding of the relationship between informal caregiving and palliative care. To better understand palliative care in the context of caregiving, we provide an overview of the nature of a caregiving career from inception to care recipient placement and death and the associated tasks, challenges, and health effects at each stage of a caregiving career. This in turn leads to key unanswered questions designed to advance research in caregiving and palliative care. Little is known about the extent to which and how palliative care uniquely affects the caregiving experience. This suggests a need for more fine-grained prospective studies that attempt to clearly delineate the experience of caregivers during palliative and end-of-life phases, characterize the transitions into and out of these phases from both informal and formal caregiver perspectives, identify caregiver needs at each phase, and identify effects on key caregiver and patient outcomes. Inasmuch as most caregivers must deal with chronic, debilitating, and often life-threatening conditions, it is essential that we advance a research agenda that addresses the interplay between informal care and formal palliative care.

Although providing care to a family member or friend may provide psychological benefits, informal (i.e., unpaid) caregivers also encounter difficulties which may negatively affect their quality of life as well as their mental and physical health. Loneliness is one important challenge that caregivers face, with this psychological state being associated with morbidity and premature mortality. Although previous research has identified loneliness as an issue associated with being an informal caregiver, there is a paucity of evidence that attempts to understand this phenomenon in depth. This study aimed to examine informal caregivers' reflections on, and accounts of, experiences of loneliness linked to their caregiving situation. As part of a cross-sectional, qualitative study, sixteen semi-structured interviews were conducted with 8 spousal caregivers, 4 daughters caring for a parent, 3 mothers caring for a child (or children), and 1 woman looking after her partner. The cared-for persons were suffering from a range of mental and physical health conditions (e.g., dementia, frailty due to old age, multiple sclerosis, depression, autism). Data were analyzed using an inductive thematic analysis. Experiences of loneliness were described by reference to a context of shrunken personal space and diminished social interaction caused by the restrictions imposed by the caregiving role. Loneliness was also articulated against a background of relational deprivations and losses as well as sentiments of powerlessness, helplessness, and a sense of sole responsibility. Social encounters were also seen to generate loneliness when they were characterized by some form of distancing. Though not all sources or circumstances of loneliness in caregivers are amenable to change, more opportunities for respite care services, as well as a heightened sensibility and social appreciation of caregivers' valued contributions could help caregivers manage some forms of loneliness.

Objectives: Social isolation and loneliness are serious public health issues given the association with negative physical, mental; and cognitive health outcomes and increased risk for mortality. Due to changes in life circumstances many aging adults are socially isolated and experience loneliness. We examined the relationships among four correlated but distinct constructs: social network size, social support, social isolation, and loneliness as they relate to indices of health and wellbeing among diverse subpopulations of older adults. Guided by WHO’s International Classification of Functioning, Disability and Health (ICF) we also examined factors that predict loneliness and social isolation.Methods: Analyses of baseline data from sample of older adults who participated in an intervention trial that examined the beneficial effects of a software system designed to support access to resources and information, and social connectivity. Participants included 300 individuals aged 65–98, who lived alone, were primarily of lower socio-economic status and ethnically diverse. Participants completed a demographics questionnaire, self-report measures of health, depression, social network size, social support, and loneliness.Results: Loneliness was strongly associated with depression and self-ratings of health. In turn, greater social isolation and less social support were associated with greater loneliness. Social isolation was associated with depression and lower self-ratings of health. The association between social isolation and health was mediated by loneliness. Individuals in the older cohorts (80+) reported less social support. With respect to loneliness, having a smaller social network, more functional limitations, and limitations in engaging meaningful activities was associated with higher levels of loneliness and greater social isolation.Conclusion: The findings underscore the importance of social connectively to wellbeing for older adults and suggest that those in the older cohorts, who have a small social network, and with greater physical and functional impairments may be particularly vulnerable to being socially isolated and lonely. The findings provide guidance for future interventions. In this regard, we discuss how Information and Communication Technologies (ICTs) may be used to promote social connectivity and engagement. Strategies to make the usability and availability of these applications for aging adults are highlighted.

BackgroundAdolescent Girls with Developmental Disabilities (AGDD) face unique challenges in menstruation management, requiring care and support from both informal and formal caregivers. Limited research has explored the experiences of these caregivers in managing AGDD’s menstrual health, particularly in this study setting.ObjectiveThis study seeks to explore the experiences and perspectives of the informal and formal caregivers on the menstruation management of adolescent girls with developmental disabilities in selected special schools in Karveer Taluka, Maharashtra.MethodsA qualitative study was conducted among informal caregivers (family members) and formal caregivers (special school staff) of those AGDD, who were aged 10–19 years, had attained menarche, and were attending three selected special schools of Karveer Taluka, Maharashtra, India. In-depth interviews (IDI), in the local language, Marathi, using an IDI guide developed based on a conceptual framework, were conducted among 14 informal and 13 formal caregivers. Interviews were audio-recorded with consent and transcribed verbatim. A thematic analysis using deductive and inductive approaches was carried out using MAXQDA software. Some codes and themes were deductively generated from the interview guide/conceptual framework, and others were generated inductively from the data. The transcripts were coded line by line and later grouped under relevant categories. Categories were grouped into subthemes, and broader themes were derived from the subthemes. The themes were interpreted and analyzed, and appropriate conclusions were drawn.ResultsFour deductive and one inductive theme were generated: The deductive themes are challenges faced by informal caregivers in managing menstruation of AGDD, patterns of menstrual acceptance and behavioural changes among AGDD, long-term concerns of the informal caregivers and perspectives on menstrual management, and recommendations given by the informal and formal caregivers for supporting AGDD. The inductive theme generated is the role of formal caregivers in training AGDD in menstruation management.ConclusionThe study underscores the critical role of informal and formal caregivers and their challenges in managing AGDD’s menstrual health, highlighting the need for targeted training and support programs.Supplementary InformationThe online version contains supplementary material available at 10.1186/s12905-025-04029-y.