Dataset Information

How do clients and (In)formal caregivers experience quality of home care? A qualitative approach.

ABSTRACT: AIM:To explore and understand the views of clients and formal and informal caregivers about the experienced quality of home care for older people. DESIGN:A descriptive qualitative study was conducted using individual interviews. METHODS:Six home care clients, four formal and six informal caregivers were recruited from two Dutch home care organizations. Individual, semi-structured interviews took place between April - November 2018. The INDividually EXperienced QUAlity of Long-term care framework was used to guide data collection and content analyses. RESULTS:The analyses revealed several important attributes contributing to experienced quality of home care such as a preferred small number of caregivers, perceived sufficient time for care provision and a caring atmosphere facilitating open communication and humour. Participants indicated that care routines fitting with the care receiver's former way of living were important. A more 'close' personal care relationship related to trust, openness and empathy was preferred over a more 'detached' professional care relationship. CONCLUSION:This study identified a wide range of attributes related to experienced quality of care from the perspectives of clients and formal and informal caregivers in home care. IMPACT:Care providers are being challenged to structurally assess individual experienced quality of home care. This study underlines the importance of incorporating care preferences and experiences throughout the care process from a relationship-centred care approach. Relevant care measures and outcomes should be determined to gain insight and further improve individual care provision.

SUBMITTER: Haex R

PROVIDER: S-EPMC6972588 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

How do clients and (In)formal caregivers experience quality of home care? A qualitative approach.

Haex Roy R Thoma-Lürken Theresa T Beurskens Anna J H M AJHM Zwakhalen Sandra M G SMG

Journal of advanced nursing 20191106 1

<h4>Aim</h4>To explore and understand the views of clients and formal and informal caregivers about the experienced quality of home care for older people.<h4>Design</h4>A descriptive qualitative study was conducted using individual interviews.<h4>Methods</h4>Six home care clients, four formal and six informal caregivers were recruited from two Dutch home care organizations. Individual, semi-structured interviews took place between April - November 2018. The INDividually EXperienced QUAlity of Lo ...[more]

PMID: 31612489

Similar Datasets

Project description:BackgroundDue to a growing shortage in residential care, people with dementia will increasingly be encouraged to live at home for longer. Although people with dementia prefer extended independent living, this also puts more pressure on both their informal and formal care networks. To support (in)formal caregivers of people with dementia, there is growing interest in unobtrusive contactless in-home monitoring technologies that allow caregivers to remotely monitor the lifestyle, health, and safety of their care recipients. Despite their potential, these solutions will only be viable if they meet the expectations and needs of formal and informal caregivers of people with dementia.ObjectiveThe objective of this study was to explore the expected benefits, barriers, needs, and requirements toward unobtrusive in-home monitoring from the perspective of formal and informal caregivers of community-dwelling people with dementia.MethodsA combination of semistructured interviews and focus groups was used to collect data among informal (n=19) and formal (n=16) caregivers of people with dementia. Both sets of participants were presented with examples of unobtrusive in-home monitoring followed by questions addressing expected benefits, barriers, and needs. Relevant in-home monitoring goals were identified using a previously developed topic list. Interviews and focus groups were transcribed and inductively analyzed. Requirements for unobtrusive in-home monitoring were elicited based on the procedure of van Velsen and Bergvall-Kåreborn.ResultsFormal and informal caregivers saw unobtrusive in-home monitoring as a support tool that should particularly be used to monitor (the risk of) falls, day and night rhythm, personal hygiene, nocturnal restlessness, and eating and drinking behavior. Generally, (in)formal caregivers reported cross-checking self-care information, extended independent living, objective communication, prevention and proactive measures, emotional reassurance, and personalized and optimized care as the key benefits of unobtrusive in-home monitoring. Main concerns centered around privacy, information overload, and ethical concerns related to dehumanizing care. Furthermore, 16 requirements for unobtrusive in-home monitoring were generated that specified desired functions, how the technology should communicate with the user, which services surrounding the technology were seen as needed, and how the technology should be integrated into the existing work context.ConclusionsDespite the presence of barriers, formal and informal caregivers of people with dementia generally saw value in unobtrusive in-home monitoring, and felt that these systems could contribute to a shift from reactive to more proactive and less obtrusive care. However, the full potential of unobtrusive in-home monitoring can only unfold if relevant concerns are considered. Our requirements can inform the development of more acceptable and goal-directed in-home monitoring technologies to support home-based dementia care.

Project description:Background: The study of the experience of clients across multiple service encounters (or touchpoints) is important from the perspective of service research. Despite the availability of effective psychotherapies, there exists a significant gap in the optimal delivery of such interventions in the community. Therefore, the aim of this study was to explore the experience of psychotherapy among clients integrating the before-during-after service encounters using a qualitative approach. Methods: A total of 15 clients of outpatient psychotherapy were interviewed, and data saturation was reached. The topics included pathways and reasons to seeking psychotherapy, aspects of the therapy process that have been helpful or unhelpful, and perceived change after receiving psychotherapy. Information was analyzed using the inductive thematic analysis method. Emergent themes pertaining to pre-psychotherapy encounters were mapped onto major components that were identified in Andersen's Health Service Utilization Model. Results: Mental health stigma and the lack of understanding about psychotherapy were the predisposing factors that impeded service use while the preference for non-pharmacological intervention promoted its use. Enabling factors such as affordability and service availability were also of concern, along with perceived and evaluated needs. The attributes of therapists, application of techniques, and the resistance of the client were found to impact the therapeutic alliance. While the majority of the clients experienced positive change or had engaged in self-help strategies after receiving psychotherapy, some cited limited impact on the recovery of symptoms or problematic self-coping without the therapists. Conclusion: This study proposes to expand on Andersen's Behavioral Model by including therapy-related factors so as to provide a more holistic understanding of the use of psychotherapy among the clients. More importantly, the study identified several barriers to access and negative experiences or outcomes, which should be addressed to promote uptake of the psychotherapy intervention.

Project description:BackgroundIn palliative care, caring for spouses suffering from incurable diseases can provoke a range of reactions in informal caregivers that are part of the grieving process, as well as other reactions and ways of coping with a current role, which is often challenging. Anticipatory grief occurs before death and is often present in people who face the eventual loss of a loved one or their own death. This study aimed to gain insight into the anticipatory grief of informal caregivers who are providing at-home palliative care for their ill spouse. Our research questions focus on investigating the meanings caregivers ascribe to the experience of providing palliative care and the impending loss of a spouse.MethodsA qualitative study was conducted in Zagreb, Croatia, from April to June of 2021. Eight participants took part in the study. Participants in the study were informal caregivers of a spouse suffering from an incurable, terminal disease that receives at-home palliative care. Data were collected through semi-structured face-to-face interviews. Transcripts were analyzed by interpretive phenomenological analysis.ResultsThe analysis provided several meanings that represent caregivers' experiences and coping strategies. The caregivers bravely face the challenges of "living with an illness" by maintaining optimism, strong cohesion with their partner and a sense of joint destiny. They tend to repress their own personal needs and feelings while carrying the burden of care. Caregivers tend to stay positive and focus on living in the present by taking an active role in providing care for the ill spouse and family.ConclusionsAnticipatory grief presents emotional, cognitive, and spiritual challenges to spouse caregivers in palliative care. The contribution of this study was to gain insight into the meaning that caregivers ascribe to the experience and challenges they face while providing everyday care for their ill spouse. Confirming prior results, the experiences are generally similar to all caregivers, pointing to the need for substantial improvement in the quality of the support and help from the healthcare workers and other experts who provide palliative care and support for the patients' family members.

Project description:BackgroundHome care (HC) services are crucial to the health and social wellbeing of older adults, people with disabilities, and the chronically ill. Although the HC sector is growing rapidly in the USA, there is high job turnover among the HC aide workforce. HC provides an important alternative to facility-based care, yet it has often been overlooked within the larger health care system: most recently, in COVID-19 pandemic planning. The objective of the study was to characterize qualitatively the impact of the COVID-19 pandemic on three key HC stakeholders: clients, aides, and agency managers.MethodsThe study included 37 phone interviews conducted during April - November 2020: HC clients (n = 9), aides (n = 16), and agency managers (n = 12). All interviews were audio recorded and transcribed verbatim. Qualitative analysis of the transcripts followed the grounded theory approach. The interview transcriptions were coded line-by-line into hierarchical themes with NVivo 12 software which allowed weighting of themes based on the number of interviews where they were coded.ResultsFear of infection and transmission among HC clients and aides were strong themes. Infection prevention and control became the top priority guiding day-to-day business operations at agencies; sourcing adequate personal protective equipment for staff was the most urgent task. HC aides expressed concerns for their clients who showed signs of depression, due to increased isolation during the pandemic. The disappearance of comforting touch - resulting from physical distancing practices - altered the expression of compassion in the HC aide-client care relationship.ConclusionsThe findings suggest that the pandemic has further increased psychosocial job demands of HC aides. Increased isolation of clients may be contributing to a wider public health problem of elder loneliness and depression. To support the HC stakeholders during the on-going COVID-19 pandemic, for future pandemic planning or other health emergencies, it is important to improve HC aide job retention. This action could also ease the serious care services shortage among the growing population of older adults.

Project description:BACKGROUND:To optimize home care, it is essential to determine how care recipients experience quality of care. Traditionally, quality of care is measured with normative quality indicators such as safety, efficiency, or prevalence rates such as falls. The growing interest for qualitative patient-reported experience measures in home care requires insight into the needs of care receivers, providers, and organizations as key-stakeholders. Each stakeholder has their own needs that are important to communicate and use to conduct thorough comparisons before implementing new experience measures. This study aims to understand the needs of clients, formal/informal caregivers, and managers/policy officers in measuring client's experienced quality of care in home care. METHODS:Four focus group interviews and 25 semi-structured interviews with key-stakeholders were conducted and analyzed by means of content analysis. The value-proposition canvas was used as a thematic framework to explore the purpose of experience quality of care measures and related pains and gains. RESULTS:There were two main purposes for measuring experienced quality of care: first improving the primary care process of individual clients and second for learning and improving in home care team. Using experienced quality of care measures for external accountability and transparency on an organizational or national level were considered less relevant. Among others, participants described not having time and no clear procedure for conducting an evaluation as a pain of the current methods used to evaluate perceived quality of home care. As gains they put forward the ability to informally evaluate experiences during care delivery and to openly discuss complaints with a familiar caregiver. CONCLUSIONS:This study advocates that home care organizations should be aware of the goal of quality of care measures. They should consider selecting experienced quality of care measures mainly for improving primary care processes of individual clients. The results also underline the relevance of adopting next to quantitative evaluations, more narrative evaluation methods which support communicating openly on care experiences, leading to concrete point-of-improvement. The findings of this study can serve as a guide for both the development or selection of adequate methods, from the perspectives of key-stakeholders, in assessing experienced quality in home care.

Project description:BACKGROUND:Currently, there are no formalized measures for the quality of home based palliative care in Ontario. This study developed a set of potential quality indicators for seriously ill home care clients using a standardized assessment. METHODS:Secondary analysis of Resident Assessment Instrument for Home Care data for Ontario completed between 2006 and 2013 was used to develop quality indicators (QIs) thought to be relevant to the needs of older (65+) seriously ill clients. QIs were developed through a review of the literature and consultation with subject matter experts in palliative care. Serious illness was defined as a prognosis of less than 6 months to live or the presence of severe health instability. The rates of the QIs were stratified across Ontario's geographic regions, and across four common life-limiting illnesses to observe variation. RESULTS:Within the sample, 14,312 clients were considered to be seriously ill and were more likely to experience negative health outcomes such as cognitive performance (OR?=?2.77; 95% CI: 2.66-2.89) and pain (OR?=?1.59; 95% CI: 1.53-1.64). Twenty subject matter experts were consulted and a list of seven QIs was developed. Indicators with the highest overall rates were prevalence of falls (50%) prevalence of daily pain (47%), and prevalence of caregiver distress (42%). The range in QI rates was largest across regions for prevalence of caregiver distress (21.5%), the prevalence of falls (16.6%), and the prevalence of social isolation (13.7%). Those with some form of dementia were most likely to have a caregiver that was distressed (52.6%) or to experience a fall (53.3%). CONCLUSION:Home care clients in Ontario who are seriously ill are experiencing high rates of negative health outcomes, many of which are amenable to change. The RAI-HC can be a useful tool in identifying these clients in order to better understand their needs and abilities. These results contribute significantly to the process of creating and validating a standardized set of QIs that can be generated by organizations using the RAI-HC as part of normal clinical practice.

Dataset Information

How do clients and (In)formal caregivers experience quality of home care? A qualitative approach.

Publications

How do clients and (In)formal caregivers experience quality of home care? A qualitative approach.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets