Experiences Of Informal Caregivers Research Articles

Beyond the Burden: A Qualitative Inquiry into the Experiences of Chinese Informal Caregivers for People Living with HIV or AIDS [Letter

Beyond the Burden: A Qualitative Inquiry into the Experiences of Chinese Informal Caregivers for People Living with HIV or AIDS [Letter

"Reablement in Flanders: An exploration of the Flemish context. Understanding stakeholders' perspectives."

Background: The primary care sector in Flanders, Belgium, is undergoing an intense period of reform. To incorporate health, well-being and quality of life, care is shifting from acute disease-oriented care to chronic integrated care. There is a need to reform primary care services more directed to community-based service, targeting person-centered care and self-management of people who receive home care and their systems.
 Reablement is an approach or service model that can be described as a multidisciplinary short term intervention aimed at maintaining and optimizing functional ability and independence of people who receive home care and to promote participation in the local community. The effectiveness of reablement has been researched to a gold standard in different countries worldwide. Results show cost savings, reduced readmission to hospital and to nursing homes as well as increased satisfaction for the professionals and for the people receiving home care. 
 Aim: The purpose of this study is to understand the stakeholder’s perspective on factors that might contribute to a successful and sustainable implementation of reablement in Flanders and factors seen as challenges to deploy this service. By understanding these perspectives, inferences can be made as to whether reablement in Flanders is desirable and feasible.
 Methods: To perform a context analysis, five focus group interviews were conducted with 35 stakeholders in primary care: patient associations, professional caregivers, health insurance funds, researchers, physiotherapists, occupational therapists, social workers and managers. The focus group interviews were transcribed and an hermeneutical analysis was conducted.
 Results: The analysis resulted in two main themes: facilitators and challenges for the implementation of reablement in Flanders.
 Facilitators are: the conviction that multidisciplinary collaboration will be more effective, shared decision making and planning will be encouraged, self management, person centered care, goal oriented and context oriented care will be optimized, continuity of integrated healthcare will be facilitated and the experience of informal caregivers will be better incorporated.
 Challenges are: lack of a clear definition of reablement in Dutch, people must be intrinsically motivated, the service must be financially and organizationally accessible to all, this approach requires a mindset shift of the healthcare professional, an efficient common communication system is essential and consultation must be financially supported for each person and healthcare professional involved in the service.
 
 In general, the goal and the added value of reablement were recognized by everyone as self-evident, but implementation of this service in the current healthcare system in Flanders requires an organizational shift from a supply driven to a demand driven care, a framework for multidisciplinary integrated cooperation and financial support, and sufficient time for both the people who receive home care and the health care professionals. 
 This is the first study involving stakeholders in primary care in Flanders looking at the chances for reablement. Working with primary care providers we now aim to conduct Reable-Labs in different primary care settings in order to provide real life examples and experiences of reablement and its outcomes in the Flemish sector.

EXPLORING THE LIVED EXPERIENCES OF BLACK INFORMAL CAREGIVERS: A SCOPING REVIEW

Abstract Understanding the unique caregiving experiences of Black informal caregivers, most of whom are women, and how they are influenced by the historical and sociopolitical context of the Black experience in the America is critical to building an effective care infrastructure that is inclusive. Gaps in existing literature include a paucity of studies that explore in-group differences in the caregiving experiences of Black informal caregivers as well as a dearth of qualitative studies that center their voices and lived experiences. This scoping review explored current representations of the Black informal caregiving experience in qualitative literature. It sought to address the heterogeneity in the Black caregiver experience through amplification of caregivers’ voices. Specifically, it included studies that focused on varied informal caregiving arrangements which exist for Black informal caregivers who are caring for chronically or terminally ill adults. Overall, 65 studies were selected for full-text review. After data characterization of the full-text articles, nine studies remained and were included in the analysis. Four broad themes were identified: (1) cultural beliefs, (2) religion and spirituality, (3) systemic barriers (healthcare system and care structures), and (4) caregiver health and well-being (physical and mental health). Findings underscore the need for an intersectional lens in exploring the implications of the Black informal caregiving experience. Their cultural and religious/spiritual identities are linked to the historical experience of Black people in the United States. Their caregiving experiences often involve cultural obligations and expectations that create tension between fulfilling caregiver roles and providing for their own health and well-being.

Roles and experiences of informal caregivers of older adults in community and healthcare system navigation: a scoping review

ObjectiveInformal caregivers are playing a vital role in improving the degree to which older adults access community and healthcare systems in a more seamless and timely manner, thereby fulfilling their...

Dementia caregiving in Nigeria: is stigma a motivator for care, a barrier to care, or both?

AbstractBackgroundSome Nigerians struggle to make sense of symptoms resulting from Alzheimer’s disease and related dementias (ADRD). This may not be surprising as there is no word for dementia in its over 500 local languages. Thus, some Nigerians use words to explain ADRD symptoms that may stigmatize people living with dementia and their families.MethodOur qualitative descriptive study while focusing on the everyday understanding of dementia, aims to highlight the influence of stigma on the caregiving experiences of informal female Nigerian dementia caregivers. Semi‐structured interviews were conducted with a purposive sample of 12 adult informal female caregivers in Nigeria. We analyzed the interview transcripts for themes. Then, the findings were shared with focus groups of 21 adult Nigerians residing in the United States to gain more contextual insight on the initial findings.ResultThe three major themes identified in the study include: 1) misconceptions about ADRD symptoms, 2) stigma as a negative motivator, and 3) stigma weakens family support.ConclusionOverall, we argue that a combination of limited ADRD knowledge and awareness, and traditional beliefs drive ADRD‐related stigmatization. This consequently affects access to caregiving and family support. Strategies such as culturally appropriate ADRD awareness campaigns and formal long‐term care policies are urgently needed. These would help reduce the risk of ADRD‐stigmatization and strengthen informal dementia caregiving in Nigeria.

Experiences of informal caregivers taking care of heart surgery patients after discharge from hospital: a qualitative study

Abstract Background/Introduction Open heart surgery is still the main treatment option for severe coronary and heart valve disease. After discharge from hospital, caregivers of heart surgery patients are given the main responsibility for care of their next of kin at home. There is a lack of studies on caregivers’ experiences with information from health care professionals regarding the discharge to home. Purpose To explore the informal caregivers' information and communication experiences with health care professionals following discharge to home after heart surgery Methods In-depth interviews using a semi-structured interview guide during videotelephony (Facetime), phone or face-to-face onsite interview. The settings were university hospitals in Norway and Denmark respectively and were carried out between November 2022 – January 2023. Data was analyzed in the NVivo software tool following Braun and Clarke`s 6-step thematic analysis process. Results Twelve informal caregivers (10 women, 2 men, mean age 65 years) were interviewed two to four weeks after the heart surgery patient had been discharged to home. Four main themes were identified: i) Lack of information ii) Insecurity, iii) Responsibility without knowledge and iv) Readmission to hospital is a challenge. Shortly after discharge the caregivers realized the consequences of lack of information and knowledge to facilitate for their next of kin` comfort, and how to manage if their symptoms worsened. Several caregivers were afraid, and especially if readmission to hospital due to serious complications were needed (Figure 1). Conclusion(s) Informal caregivers of heart surgery patients lack information from health care professionals, and communication with health care professionals at hospital discharge to gain knowledge, feel secured, and to be prepared for the responsibility for follow-up of their next of kin at home.Figure 1.Caregivers heart surgery pts.

Impact of a COVID-19-Related Lockdown on the Experience of Informal Caregiving in Singapore

Introduction: Lockdowns, while limiting COVID-19 transmission, can affect provision of care by informal caregivers and their caregiving experience. We assessed, among informal caregivers in Singapore, (a) the perceived impact of a 2-month (April to May 2020) nationwide lockdown on their care provision, (b) correlates of different perceptions of the impact of the lockdown on care provision, and (c) association of different perceptions of the impact with negative and positive experiences of caregiving. Methods: In the August 2020 wave of the Singapore Life Panel (SLP; nationally representative, longitudinal monthly survey of Singapore citizens and permanent residents aged 50–70 years at baseline), 1,094 participants identified as informal caregivers reported whether their care provision became easier, remained the same, or became harder during the lockdown, compared to before the lockdown. We used multinomial logistic regression to assess the association of caregiver, care recipient, and caregiving context characteristics with their perceptions. Linear regression models examined the association of their perceptions with negative and positive experience domains of the modified Caregiver Reaction Assessment. Results: Just over one-third (36.1%) of the informal caregivers reported that their care provision became harder during the lockdown compared to before the lockdown. However, nearly one-fifth (18.0%) said that it became easier, and the rest (45.9%) said that it remained the same. Care provision was more likely to be perceived as having become harder among caregivers who were male, of Chinese ethnicity, in worse health, whose care recipients had functional limitations, who did not have caregiving support from cohabiting family members before the lockdown, and who had caregiving support from non-cohabiting family members before the lockdown. The perception that care provision became easier was less likely among caregivers who were of higher age, were unemployed, were socially isolated, and whose care recipients had functional limitations. Caregivers who perceived that care provision became harder during the lockdown were worse-off in negative experiences of caregiving. Conclusion: A nationwide lockdown did not make care provision harder for all informal caregivers. However, informal caregivers for whom it did were more likely to have greater negative experiences of caregiving. The heterogeneity of the impact of lockdowns and the possibility of offering flexibility to non-cohabiting family members who support caregiving should be important considerations when planning for such disruptions.

Journeying Apart: Exploring Informal Caregiver Experiences and Unmet Closures in Caring for COVID-19 Deceased.

The current study investigates the experiences and expectations of informal caregivers who lost their loved ones to the COVID-19 virus. The unusual circumstances of the deaths including physical isolation from their loved ones during the final hours before death significantly impacted their grieving process. In this interpretative phenomenological study, caregivers' experiences are explored through the lens of grief models and Gestalt perspectives. By thematic coding, seven superordinate themes emerged: Inability to accept death, Unfair nature of death, Helplessness, Regret and self-blame, Shattering of assumptive world, Using work as a distraction and Lack of government facilities. The findings of this study suggest that a significant number of informal caregivers continue suffering through the distress caused by the death of their loved ones in the pandemic, highlighting the need for grief counselling interventions for such bereaved informal caregivers.

How the dyads of heart failure patients and their informal caregivers cope with the disease process: a qualitative synthesis

Abstract Funding Acknowledgements Type of funding sources: None. Introduction Heart failure (HF) is a debilitating and progressive condition requiring consistent self-care by patients and their caregivers. Understanding the dyadic coping experience is crucial to inform the development of effective self-care interventions. Existing reviews focused on coping experience of patients or informal caregivers separately, without considering dynamic interaction between patients and caregivers. Purpose This review aimed to synthesize the qualitative studies to understand how patients and their caregivers interact and jointly cope with HF. Methods A systematic literature searching was conducted in nine electronic databases from inception to 11 June 2022. Manual searching of the reference list of relevant articles was also conducted. Articles were eligible if they focused on exploring the dyadic coping experience of HF patient-caregiver dyads aged 18 years or older. The Critical Appraisal Skills Programme tool for qualitative studies was used to assess the methodological quality of included articles. Thematic synthesis was adopted to synthesize the findings. Results Thirty articles were included in the review. Eleven articles were rated as high quality and nineteen as moderate quality. Three analytical themes emerged from the findings: (1) challenges in their changing and shared life experience, (2) conditions shaping dyadic coping experience, and (3) evolving dyadic coping strategies from the illness experience (Figure 1). Patients’ progressive and debilitating disease conditions disrupted the shared lives of the dyads, consequently causing a series of stressors for both to cope with. Dyadic coping of HF is influenced by the interpersonal context (i.e., congruence of illness perception, dyadic relationship and interaction, dyadic coping capabilities) and social context (i.e., professional and informal input). During the coping process, HF dyads utilized constructive or destructive methods of adjusting relationship boundaries, transforming patterns of dyadic coping and regulating emotion in a dyadic context. Besides, the strategies of amplifying positive changes and seeking meaning were critical for dyads to normalize HF in their lives. Conclusion HF imposed multiple stressors on the shared life of the dyads. Under the influence of interpersonal and social context, patients and caregivers co-regulated dyadic coping strategies to respond to dyadic stress, either adaptively or maladaptively. A relationship-focused dyadic approach is needed to optimize the synergy in the dyadic coping process and support dyads to cope with HF.

The Experiences of Informal Caregivers of People With Dementia in Web-Based Psychoeducation Programs: Systematic Review and Metasynthesis.

Informal caregivers of people living with dementia experience a higher level of physical and mental stress compared with other types of caregivers. Psychoeducation programs are viewed as beneficial for building caregivers' knowledge and skills and for decreasing caregiver stress. This review aimed to synthesize the experiences and perceptions of informal caregivers of people with dementia when participating in web-based psychoeducation programs and the factors that enable and impede informal caregivers' engagement in web-based psychoeducation programs. This review followed the Joanna Briggs Institute protocol of systematic review and meta-aggregation of qualitative studies. We searched 4 English databases, 4 Chinese databases, and 1 Arabic database in July 2021. A total of 9 studies written in English were included in this review. From these studies, 87 findings were extracted and grouped into 20 categories. These categories were further synthesized into 5 findings: web-based learning as an empowering experience, peer support, satisfactory and unsatisfactory program content, satisfactory and unsatisfactory technical design, and challenges encountered in web-based learning. High-quality and carefully designed web-based psychoeducation programs offered positive experiences for informal caregivers of people living with dementia. To meet broader caregiver education and support needs, program developers should consider information quality and relevancy, the support offered, individual needs, flexibility in delivery, and connectedness between peers and program facilitators.

"I Feel Like I Work Full-Time for Parkinson's": A Longitudinal Interpretative Phenomenological Analysis of the Experiences of Parkinson's Informal Caregivers during COVID-19 in England.

While the direct effects of COVID-19 caused widespread global suffering and death, the indirect impacts-via public health preventative measures and a reduction in health and social care services-were also devastating for many. More recently, it has also become increasingly apparent that such measures have had disproportionate effects, exacerbating existing health inequalities. For caregivers of individuals with chronic illness, the effects have been marked and particularly so for informal caregivers of individuals with complex neurodegenerative conditions such as Parkinson's. Nine informal caregivers (all partners: three men and six women) of individuals with Parkinson's in England took part in individual semi-structured interviews on two occasions (December 2021/January 2022 and May 2022). The interviews focused on their experiences of supporting their partner, their own challenges, and how these evolved and changed post-lockdown. Interpretative phenomenological analysis was used to inform the methodology and analysis. Four themes were identified: (i) lockdown-induced revolution and evolution of the relationship dynamic with partner; (ii) fighting to be seen, heard, and understood in healthcare encounters; (iii) making sense of, and adapting to, risk in a time of COVID-19; and (iv) managing isolation and need for support during and after lockdown. The negative effects from both the lockdowns and the depletion of usual health and support services were apparent for all participants. Existing vulnerabilities from being a carer of an individual with complex needs were also exacerbated. As caregivers worked hard to mitigate these effects for their partners as much as possible, the long-term impact of such intense psychological and practical effort was often considerable. Ultimately, a simple restoration of pre-lockdown support levels may be insufficient to facilitate a successful return to optimal levels of support and wellbeing.

Navigating the Cancer Journey Using Web-Based Information: Grounded Theory Emerging From the Lived Experience of Cancer Patients and Informal Caregivers With Implications for Web-Based Content Design.

The internet is an important source of information for many informal caregivers and patients living with cancer. A better understanding of how individuals use the internet to meet their informational needs is important for guiding intervention development. The objectives of this study were to develop a theory describing why individuals living with cancer use the internet to find information, characterize the challenges faced with existing web-based content, and provide recommendations for web-based content design. Adults (≥18 years) with a history of being patients with cancer or informal caregivers were recruited from Alberta, Canada. After providing informed consent, participants were engaged through digitally recorded one-on-one semistructured interviews, focus groups, a web-based discussion board, and emails. Classic grounded theory guided the study procedures. A total of 21 participants took part in 23 one-on-one interviews and 5 focus groups. The mean age was 53 (SD 15.3) years. Breast, gynecological, and hematological cancers were the most common cancer types (4/21, 19% each). In total, 67% (14/21) of patients, 29% (6/21) of informal caregivers, and 5% (1/21) of individuals reporting both roles participated. Participants experienced many new challenges in their cancer journey and used the internet to become better oriented to them. For each challenge, internet searching attempted to address one or more of 3 key orientation questions: why the challenge was happening, what to expect, and options for managing it. Better orientation resulted in improved physical and psychosocial well-being. Content that was well laid out, concise, free of distractions, and that addressed the key orientation questions was identified as the most helpful in assisting with orientation. Creators of web-based content are encouraged to 1) clearly identify the cancer challenge and population the content is addressing, as well as the presence of any potentially distressing information; 2) provide versions of the content in different formats, including printer-friendly, audio, video, and alternative languages; 3) state who created the content, including the individuals, organizations, and processes involved; 4) place hyperlinks after the key orientation questions have been addressed; and 5) ensure that the content is optimized for discovery by search engines (ie, Google). Web-based content plays an essential role for many living with cancer. Clinicians are encouraged to take active steps to help patients and informal caregivers find web-based content that meets their informational needs. Content creators also have a responsibility to ensure that the content they create assists and does not hinder those navigating the cancer journey. Research is needed to better understand the many challenges that individuals living with cancer face, including how they are temporally related. In addition, how to optimize web-based content for specific cancer challenges and populations should be considered an important area for future research.

Perceptions and Experiences of Informal Caregivers of Breast Cancer Patients in South India: A Qualitative Study

This study was conducted to explore the prevailing perceptions and experiences of caregiving burden among informal caregivers of women living with breast cancer in South India. In-depth interviews were conducted among breast cancer care-receivers (n=35) and their informal caregivers (n=39) and a thematic analysis was used to analyze the data. Informal caregiver in the context of this study was defined as one who takes up the responsibility of an informal caregiving role, and were either self-identified or acknowledged by the care-receivers. Four main inductive themes in the domains of: emotional culpability, financial and workplace liability, psychosocial affliction, physical strain and health system demand were identified, that were associated with caregiver burden. Informal caregivers form an integral part of the cancer care continuum in India. It is recommended to factor in the identified themes while developing a caregiver needs assessment model in the context of caring for breast cancer patients in the Indian setting.

Caregiving experiences of informal caregivers of adult stroke patients during the COVID-19 pandemic: a qualitative systematic review protocol.

The objective of this review is to identify, appraise, and synthesize the best available qualitative evidence on the caregiving experiences of informal caregivers of adult stroke patients during the COVID-19 pandemic. The functional and health outcomes of stroke patients are directly impacted by the mental and physical well-being of the patient's informal caregiver, which have been negatively affected by COVID-19 due to a lack of caregiver education and competency in caring for stroke patients. Therefore, improvement of the informal caregiver experience preserves the stroke survivor-caregiver relationship and the care goals of stroke patients. This review will consider qualitative studies focusing on the experiences of informal caregivers of adult stroke patients during COVID-19. Only informal caregivers will be included, defined as individuals of any age, gender, or culture who provide care, typically unpaid, to someone with whom they have a personal relationship (ie, family or friend). Studies conducted in inpatient settings, rehabilitation settings, community care settings, or home care settings will be considered. The databases to be searched include MEDLINE, CINAHL, Embase, Web of Science, and PsycINFO. Sources of unpublished studies and gray literature will include ProQuest Dissertations and Theses, MedNar, and the American Heart Association. Studies published from 2019 to the present will be considered and data synthesis will be conducted using the meta-aggregation approach. Confidence in the findings will be assessed using the ConQual approach. PROSPERO CRD42022326666.

"She is My Work": Caregiving for Older Adults With Hypertension and Diabetes Mellitus.

To explore the lived experiences of informal caregivers of older adults with hypertension and/or diabetes mellitus in Kumasi, Ghana. A qualitative research approach was used to conduct the study using informal caregivers of older adults with hypertension and/or diabetes mellitus at a teaching hospital in Ghana. In all, 20 participants were purposively sampled, interviewed, and data were analyzed using thematic analysis. Three main themes emerged: "Experience with care demands," "Coping with care demands," and "Motivation for caregiving." Older adults with hypertension and/or diabetes mellitus had needs that placed a burden on informal caregivers' work life, health, and social life. Informal caregivers of older adults with hypertension and/or diabetes mellitus are under strain. Caregiving is a difficult task, requiring a lot of time, effort, attention, and devotion. Nurses should plan the care of older adults with hypertension and/or diabetes mellitus in collaboration with their informal caregivers.

“It Isn't the Same”: Experiences of Informal Caregivers of Older Adults Enrolled in a Home-Based Senior Care Program During COVID-19

The coronavirus disease 2019 (COVID-19) pandemic placed new strains on informal caregivers, who are already vulnerable to negative psychosocial effects due to demands of the caregiving role. The current study aimed to explore the early impact of COVID-19 on caregivers living with and apart from care recipients. Semi-structured qualitative interviews with seven cohabitating and 10 distanced caregivers of patients in a home-based primary care program were conducted from April to November 2020. A framework matrix was used to identify patterns in caregiver experiences. Cohabitating and distanced caregivers reported shared concerns about COVID-19 and unique concerns dependent on cohabitation status. Cohabitating caregivers reported financial worries, care recipients with dementia being unable to understand restrictions, and concerns about community business changes. Distanced caregivers reported communication challenges with cognitively impaired care recipients and challenges with visitation policies. During pandemics, caregivers' clinical and policy support needs may differ depending on their place of residence relative to care recipients. [Journal of Gerontological Nursing, 49(3), 19-26.].

The experience of informal caregiving within Saudi society: expressed needs and expectations

BackgroundEven though informal caregivers have always been a major element within any society, their contribution to the healthcare system has only recently been recognized. Accordingly, the sustainability of their informal social role is becoming a major concern to policymakers. In Saudi Arabia, recognition of informal caregiving is still limited. This study was carried out to investigate the experience of caregiving in informal settings through identifying the needs of the caregivers along with their expectations of the formal system.MethodsA cross-sectional study was conducted to measure the experience of Saudi informal caregivers who were caring for at least one individual with a dependency resulting from either disability, aging, or both. A self-administered questionnaire was designed specifically for this study with 88% reliability. A convenient sample of 300 caregivers was invited electronically through 14 websites supporting families with dependent individuals.ResultsOf the eligible participants (n = 271), about two-thirds were caring for one elderly person or more, while one-third were caring for individual(s) with disabilities. The two groups did not differ in their needs; their greatest perceived needs were necessary equipment for care recipients, free time to socialize, alternative care setting, and proper income. Overall, the needs on the system level were the highest, followed by the needs on the financial level, then on the social level. On the other hand, the caregivers of individuals with disabilities had greater expectations of formal support than caregivers of the elderly. The greatest expectation among the participants was facilitating care recipients’ mobility within their communities. Overall, the expectations of information support were the highest followed by the expectations of financial support and then material support.ConclusionThe participants expressed great expectations of formal support along with some unmet needs. Further research is recommended to emphasize the role of primary caregivers along with the nature of the assistance received throughout the caregiving process. The needs of individuals with dependencies along with those of the caregivers must be considered in the planning process of healthcare services. Finally, the expectations of informal caregivers should lead the priorities of the development decisions of long-term care services.

Caregiver Burden in Informal Caregivers of Patients in Saudi Arabia Receiving Hemodialysis: A Mixed-Methods Study.

(1) Background: Long-term caregiving for patients receiving hemodialysis (HD), is associated with physical and psychological stress, which may impact on the well-being and quality of life of caregivers. Due to a lack of understanding of the experiences of informal caregivers of patients receiving HD, especially in Saudi Arabia, this study aimed to measure burden in informal caregivers of patients receiving HD, examine the factors that predict caregiver burden (CB), and explore the experience of burden in caregivers of patients receiving HD. (2) Methods: This study used a mixed-methods, sequential, explanatory design, which consisted of two phases. Phase 1 involved a cross-sectional study design, with a convenience sample of 61 caregivers of patients on maintenance HD for at least 3 months. All caregivers in the study completed the Arabic version of the Zarit Burden Interview to identify caregiver burden. Phase 2 of the study involved a qualitative descriptive design involving semi-structured interviews with nine caregivers. (3) Results: Study findings indicate that caregivers did not experience severe burden. Being older, a female caregiver and having comorbidities was positively associated with increased levels of caregiver burden. In the qualitative phase of the study, a number of important factors emerged that may contribute to a reduction in caregiver burden, including social support, cultural acceptance, and religious influences. (4) Conclusion and impact: CB was found to be low when a comparison was made with other studies using similar populations. Understanding the factors that influence caregiver burden will contribute to the accurate assessment of caregiver burden and help reduce burden in informal caregivers, patients with renal failure, and others with chronic illnesses worldwide.

The social, economic, emotional, and physical experiences of caregivers for women with female genital fistula in Uganda: A qualitative study

ABSTRACT This study aimed to explore the firsthand experiences of informal primary caregivers of women with female genital fistula in Uganda. Caregivers that accompanied women for surgery at Mulago National Teaching and Referral Hospital were recruited between January and September 2015. Caregivers participated in in-depth interviews and focus groups. Data were analysed thematically and informed adaptation of a conceptual framework. Of 43 caregivers, 84% were female, 95% family members, and most married and formally employed. Caregivers engaged in myriad personal care and household responsibilities, and described being on call for an average of 22.5 h per day. Four overlapping themes emerged highlighting social, economic, emotional, and physical experiences/consequences. The caregiving experience was informed by specific caregiver circumstances (e.g. personal characteristics, care needs of their patient) and dynamic stressors/supports within the caregiver’s social context. These results demonstrate that caregivers’ lived social, economic, emotional, and physical experiences and consequences are influenced by both social factors and individual characteristics of both the caregiver and their patient. This study may inform programmes and policies that increase caregiving supports while mitigating caregiving stressors to enhance the caregiving experience, and ultimately ensure its feasibility, particularly in settings with constrained resources.

Care, burden and self-described positive aspects of caring in amyotrophic lateral sclerosis: an exploratory, longitudinal, mixed-methods study

ObjectivesTo explore factors associated with care burden and the self-described positive aspects of caring for a person living with amyotrophic lateral sclerosis (ALS) over time.DesignExploratory longitudinal mixed-methods study.SettingA national multidisciplinary...