Developing an mHealth Application to Coordinate Nurse-Provided Respite Care Services for Families Coping with Palliative-Stage Cancer: Protocol for a User-Centered Design Study (Preprint)

2021 ◽  
Author(s):  
Aimee Rebecca Castro ◽  
Antonia Arnaert ◽  
Karyn Moffatt ◽  
John Kildea ◽  
Vasiliki Bitzas ◽  
...  
Keyword(s):  
At Risk ◽  
Family Caregivers ◽  
Community Support ◽  
Respite Care ◽  
User Centered Design ◽  
Care Providers ◽  
Community Partner ◽  
Care Services ◽  
Systems Research ◽  
User Centered

BACKGROUND Patients living with palliative-stage cancer frequently require intensive care from their family caregivers. Without adequate community support services, patients are at risk for inadequate care, and family caregivers are at risk for depression and poor health. For such families, in-home respite care can be invaluable, particularly when the services are flexible and staffed by trusted care providers, such as nurses. Other industries are using mobile applications (“apps”) to make services more flexible. However, few apps have been developed to coordinate nurse-provided respite care services, and to our knowledge, none have been designed with families with cancer. OBJECTIVE The aim of this study is to develop an mHealth app prototype for coordinating flexible and trusted in-home respite care services, provided by nurses to families coping with palliative-stage cancer in Québec, Canada. METHODS This user-centered design research comprises the core component of the iRespite Services iRépit research program. For this study, we are recruiting 20 nurses, 15 adults with palliative-stage cancer, and 20 of their family caregivers, from two palliative oncology hospital departments, and one palliative home-care community partner. Overseen by an Expert Council, remote data collection will occur over three research phases guided by the iterative Information Systems Research Framework: Phase 1, brainstorming potential app solutions to challenging respite care scenarios, for better supporting the respite needs of both family caregivers and care recipients; Phase 2, evaluating low-fidelity proof-of-concepts for potential app designs; and Phase 3, usability testing of a high-fidelity interactive proof-of-concept that will then be programmed into an app prototype. Qualitative and quantitative data will be descriptively analyzed within each phase and triangulated to refine the app features. RESULTS We anticipate that preliminary results will be available by Spring 2022. CONCLUSIONS An app prototype will be developed that has enough complimentary evidence to support future pilot testing in the community. Such an app could improve the delivery of community respite care services rendered to families with palliative-stage cancer in Québec, supporting death at home, which is where most patients and their families wish to be.

Who are the beneficiaries and what are the reasons for non-utilization of respite care? A cross-sectional study on family caregivers

2020 ◽  
Author(s):  
Jianan Huang ◽  
Nadja Münzel ◽  
Anke Scheel-Sailer ◽  
Armin Gemperli
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Home Care ◽  
Family Caregivers ◽  
Respite Care ◽  
Cross Sectional ◽  
Care Services ◽  
Cord Injury ◽  
Professional Home ◽  
Professional Home Care

Abstract BackgroundFamily caregivers assume substantial caregiving responsibilities for persons with chronic conditions, which leads to negative impact on their lives. Respite care is provided as a temporary relief for them. The design of appropriate respite care programs requires the identification of beneficiary subgroups for different types of services. The objectives of the study were to quantify the uptake of respite care services by family caregivers of persons with spinal cord injury, and to identify the main beneficiaries of the respective offers and the reasons for non-use.MethodsA cross-sectional survey of family caregivers of persons with spinal cord injury was conducted nationwide in Switzerland. The use of 11 different respite care services during the last 12 months was investigated, along with caregivers’ reasons for not using any respite service. Classification trees were used to characterize the beneficiaries and reasons for not using respite services.ResultsOne-third of family caregivers used at least one type of respite care service during the last 12 months. Utilization of respite care was found to be greater among those who employed professional home care (57% vs 24% among those without professional home care). There were marked cantonal differences in the utilization of respite care. The primary reason for not using respite services was “no demand” (80% among non-users of respite services), mainly among caregivers who were less emotionally affected by their caregiving tasks. Conclusions Utilization of respite care services primarily depends on living arrangements and place of residency and less on the functional status of the care recipient. Programs should thus be tailored to the cultural context of their potential users. This is best achieved through coordination with local health care professionals who can identify the needs, provide information, initiate referrals, and integrate the care into a larger support plan.

scholarly journals Factors affecting the use of home-based services and out-of-home respite care services: A survey of family caregivers for older persons with dementia in Northern Norway

Dementia ◽  
2018 ◽  
Vol 19 (5) ◽  
pp. 1712-1731 ◽  
Author(s):  
Jill-Marit Moholt ◽  
Oddgeir Friborg ◽  
Bodil H Blix ◽  
Nils Henriksen
Keyword(s):  
Family Caregivers ◽  
Urban Areas ◽  
Healthcare Services ◽  
Respite Care ◽  
Care Recipient ◽  
Full Time ◽  
Northern Norway ◽  
Care Services ◽  
Home Based ◽  
The Family

BackgroundFamily caregivers contribute substantially to the care for older home-dwelling people with dementia, although community healthcare services tend to be underutilized. In this study, we aimed to explore the use and predictors of use of home-based and out-of-home respite care services available to older home-dwelling persons with dementia, as reported by the family caregivers.MethodA cross-sectional survey was administered to family caregivers ( n = 430) in Northern Norway during April to November 2016. The use of healthcare services was categorized into two types according to principal component analysis: home-based services and out-of-home respite care services ( R2= 44.1%). Predictors of service use were examined with bivariate correlation, multiple linear regression, and Poisson regression analyses.ResultsThe use of home-based services among persons with dementia was significantly higher for persons with advanced age, persons living in urban areas, persons living in an assisted living facility, persons living alone, and persons able to manage being alone for a short period of time. Among the family caregiver variables, higher age, status as a daughter, son, or other family member, higher educational level, and full-time employment also predicted greater use of home-based services. Same ethnicity was associated with use of fewer home-based services. The use of out-of-home respite care services was significantly higher among male persons with dementia and among those living in urban areas. In addition, fewer out-of-home respite care services were used by male caregivers or daughters of the care recipient, while the use was higher when the caregivers experienced more caregiving demands or had provided care for longer periods of time.ConclusionsThese results indicate areas that policymakers and healthcare providers should consider to identify families who underutilize healthcare services and to achieve a more equal and efficient allocation of services in accordance with families' needs.

scholarly journals Assessment of Clinical and Psychological Needs of Patients With Metastatic Breast Cancer: Challenges and Gaps in Meeting Their Needs in Uganda

2018 ◽  
Vol 4 (Supplement 3) ◽  
pp. 11s-11s
Author(s):  
Henry Ddungu ◽  
Edward Kumaketch ◽  
Eva Namisango
Keyword(s):  
Breast Cancer ◽  
Health Care ◽  
Metastatic Breast Cancer ◽  
Supportive Care ◽  
Family Caregivers ◽  
Metastatic Breast ◽  
Psychological Needs ◽  
Cost Of Care ◽  
Care Providers ◽  
Care Services

Purpose Uganda has one of the highest age-standardized incidence rates for breast cancer (38.3/100,000) occurring among women age 35 to 45 years. The disease is associated with increased biomedical and psychological demands on affected women and their families. Clinical and supportive care services are offered to patients with metastatic breast cancer (MBC) to meet their needs and improve survival and quality of life. However, the existence of challenges and barriers to health care access affect the satisfaction of the needs of patients with MBC and imply that available services cannot meet every clinical and psychological need these patients. No previous assessment has been done in Uganda of the clinical and psychological needs of patients with MBC. The aim of the current study was to generate data that can be used to increase awareness of the unmet clinical and psychological needs of patients with MBC and their families to inform advocacy strategies for supportive care services in Uganda. Methods We conducted interviews, in-depth interviews, focus group discussions, and document review. Results Patients with MBC (n = 67), survivors (n = 185), clinical providers (n = 24), family (n = 134), and VHT (n = 12) participated in this work. The patient’s most important needs include physical and daily living needs (relieving pain, 85.69%; nutrition and diet, 83.69%; wound management, 80.69%; help when tired, 74.6%; help with house cores, 73.19%); health system, information, and patient support (treatment with dignity, 86.6%; pleasant environment, 83.6%; sensitivity to feelings, 80.6%; counseling, 79.1%; choice of cancer specialists, 77.6%; treatment plan, 76.1%; respect for a patient’s opinion, 74.6%); and psychological (close family concerns, 79.1%; advice on faith, 79.6%; comforting when sad, 74.6%; positive outlook, 73.3%; how to disclose, 71.6%). Long waiting times, out-of-stock medicines, inadequate hospital amenities, family exclusion during patient review conversations, caregiver burnout, cost of care, limited funding, and spiritual, legal, and human resource shortages were needs and challenges identified by survivors, family caregivers, clinical providers, and policymakers. Polices on supportive care for patients with MBC are also unclear. Conclusion There exists a mismatch between patients with MBC, survivors, and health care providers with regard to knowledge of some of the needs of patients with MBC, particularly clinical-related information needs. Dialogue between patients with MBC, survivors, family caregivers, clinical providers, and VHTs is recommended to harmonize knowledge and perceptions of the needs of patients with MBC. AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jco/site/ifc . No COIs from the authors.

scholarly journals iCanCope PostOp: User-Centered Design of a Smartphone-Based App for Self-Management of Postoperative Pain in Children and Adolescents (Preprint)

2018 ◽  
Author(s):  
Kathryn A Birnie ◽  
Fiona Campbell ◽  
Cynthia Nguyen ◽  
Chitra Lalloo ◽  
Argerie Tsimicalis ◽  
...  
Keyword(s):  
Pain Management ◽  
Postoperative Pain ◽  
Children And Adolescents ◽  
Health Care Providers ◽  
Postoperative Pain Management ◽  
Self Management ◽  
User Centered Design ◽  
Care Providers ◽  
Pain Care ◽  
User Centered

BACKGROUND Moderate to severe postoperative pain in children is common. Increased pediatric day surgeries have shifted postoperative pain management predominantly to the home setting. Mobile health technology has the potential to overcome barriers to pain care by improving access to self-management resources. However, pain apps generally lack scientific evidence and are highly underutilized due to lack of involvement of end users in their development. Thus, an evidence-based pain self-management smartphone app that incorporates the needs and perspective of children and adolescents (end users) has potential to improve postoperative pain management. OBJECTIVE This paper aimed to describe how the principles of user-centered design were applied to the development of iCanCope PostOp, a smartphone-based pain self-management app for children and adolescents after surgery. Specifically, it presents 2 completed phases of the user-centered design process (concept generation and ideation) for the iCanCope PostOp app. METHODS Phase 1 was a multisite needs assessment from the perspective of 19 children and adolescents who had undergone various day surgeries, 19 parents, and 32 multidisciplinary health care providers. Children, adolescents, and parents completed individual semistructured interviews, and health care providers participated in focus groups. Data were summarized using qualitative content analysis. Phase 2 developed a pain care algorithm for the app using Delphi surveys and a 2-day in-person design workshop with 11 multidisciplinary pediatric postoperative pain experts and 2 people with lived experience with postoperative pain. RESULTS Phase 1 identified self-management challenges to postoperative pain management and recovery; limited available resources and reliance on medications as a predominant postoperative pain management strategy; and shared responsibility of postoperative pain care by children and adolescents, parents, and health care providers. Key app functions of tracking pain, pain self-management strategies, and goal setting were identified as priorities. Phase 2 led to the successful and efficient generation of a complete preliminary pain care algorithm for the iCanCope PostOp app, including clinically relevant inputs for feasible assessment and reassessment of pain and function (rest or sleep, movement or play, and mood or worry), as well as a catalog of pain management advice to be pushed to end users (psychological, physical, pharmacological, and education). CONCLUSIONS The concept ideation and generation phases of the user-centered design approach were successfully completed for the iCanCope PostOp app. Next steps will include design finalization, app development (iOS or Android), evaluation through a randomized controlled trial, and subsequent implementation of the iCanCope PostOp app in clinical care.

Palliative family caregivers' accounts of health care experiences: The importance of “security”

2009 ◽  
Vol 7 (4) ◽  
pp. 435-447 ◽  
Author(s):  
Laura M. Funk ◽  
Diane E. Allan ◽  
Kelli I. Stajduhar
Keyword(s):  
Health Care ◽  
Family Caregivers ◽  
Health Care System ◽  
Health Care Providers ◽  
Family Caregiving ◽  
Health Care Services ◽  
Conceptual Development ◽  
Care Providers ◽  
Care Services ◽  
Care System

AbstractObjective:When providing care for a loved one with a terminal illness, family members often look to health care providers for guidance and expertise. The objective of this study is to explore family caregiver accounts of their experiences within the health care system and with individual providers.Methods:A thematic analysis of secondary qualitative data was performed. Data are from a subsample of bereaved and current family caregivers (N = 31) in a prior study of coping in end-of-life cancer situations. Data from these participants referring to experiences with health care providers was thematically coded and the concept of “security” was used as an analytic lens to facilitate conceptual development and exploration.Results:Considered together, the findings can be viewed as manifestations of a need and desire for security in palliative family caregiving. Specifically, family caregivers' accounts illustrate the importance of feeling secure that health care services will be provided by competent professionals; feeling secure in their timely access to needed care, services, and information; and feeling secure in their own identity and self-worth as a caregiver and individual. In addition, the findings suggest a conceptualization of security that extends beyond trust in individuals to include a generalized sense of institutional trust in the health care system.Significance of results:The concept of security moves beyond description of individual satisfaction or dissatisfaction with health care to identify a common, foundational need underlying such evaluations. Further empirical research is needed that explicitly focuses on caregivers' experiences of security and insecurity in the domains identified in this article. This will contribute to theory building as well as assist in identifying the causes and consequences of security.

scholarly journals Caregiver Burden and Associated Factors for the Respite Care Needs among the Family Caregivers of Community Dwelling Senior Citizens in Chiang Mai, Northern Thailand

2021 ◽  
Vol 18 (11) ◽  
pp. 5873
Author(s):  
Thin Nyein Nyein Aung ◽  
Myo Nyein Aung ◽  
Saiyud Moolphate ◽  
Yuka Koyanagi ◽  
Siripen Supakankunti ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Caregiver Burden ◽  
Associated Factors ◽  
Long Term Care ◽  
Respite Care ◽  
Chiang Mai ◽  
Care Needs ◽  
Term Care ◽  
Care Services

Background: Families are the backbone of caregiving for older adults living in communities. This is a tradition common to Thailand and many low- and middle-income countries where formal long-term care services are not so available or accessible. Therefore, population aging demands more and more young people engaging as family caregivers. Informal caregiving can become an unexpected duty for anyone anytime. However, studies measuring the burden of informal caregivers are limited. We aimed to determine the caregiver burden, both from the perspective of the caregivers as well as that of their care recipients. Method: We used the baseline survey data from a cluster randomized controlled trial providing a community integrated intermediary care (CIIC) service for seniors in Chiang Mai, Thailand, TCTR20190412004. Study participants were 867 pairs of older adults and their primary family caregivers. Descriptive analysis explored the characteristics of the caregivers and binary logistic regression identified factors influencing the caregivers’ burden. Results: The mean age of family caregivers was 55.27 ± 13.7 years and 5.5% indicated the need for respite care with Caregiver Burden Inventory (CBI) scores ≥24. The highest burden was noted in the time-dependence burden domain (25.7%). The significant associated factors affecting CBI ≥24 were as follows: caregivers older than 60 years, being female, current smokers, having diabetes, and caring for seniors with probable depression and moderate to severe dependency. Conclusions: A quarter of caregivers can have their careers disturbed because of the time consumed with caregiving. Policies to assist families and interventions, such as respite service, care capacity building, official leave for caregiving, etc., may reduce the burden of families struggling with informal care chores. Furthermore, caregiver burden measurements can be applied as a screening tool to assess long-term care needs, complementing the dependency assessment. Finally, implementation research is required to determine the effectiveness of respite care services for older people in Thailand.

scholarly journals Study Protocol for the Development of a European eHealth Platform to Improve Quality of Life in Individuals With Huntington's Disease and Their Partners (HD-eHelp Study): A User-Centered Design Approach

2021 ◽  
Vol 12 ◽  
Author(s):  
Pearl J. C. van Lonkhuizen ◽  
Niko J. H. Vegt ◽  
Eline Meijer ◽  
Erik van Duijn ◽  
Susanne T. de Bot ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Health Care Providers ◽  
End Users ◽  
Care Provision ◽  
User Centered Design ◽  
Care Providers ◽  
User Centered

Background: Huntington's disease (HD) is an autosomal dominant neurodegenerative disease that affects the quality of life (QoL) of HD gene expansion carriers (HDGECs) and their partners. Although HD expertise centers have been emerging across Europe, there are still some important barriers to care provision for those affected by this rare disease, including transportation costs, geographic distance of centers, and availability/accessibility of these services in general. eHealth seems promising in overcoming these barriers, yet research on eHealth in HD is limited and fails to use telehealth services specifically designed to fit the perspectives and expectations of HDGECs and their families. In the European HD-eHelp study, we aim to capture the needs and wishes of HDGECs, partners of HDGECs, and health care providers (HCPs) in order to develop a multinational eHealth platform targeting QoL of both HDGECs and partners at home.Methods: We will employ a participatory user-centered design (UCD) approach, which focusses on an in-depth understanding of the end-users' needs and their contexts. Premanifest and manifest adult HDGECs (n = 76), partners of HDGECs (n = 76), and HCPs (n = 76) will be involved as end-users in all three phases of the research and design process: (1) Exploration and mapping of the end-users' needs, experiences and wishes; (2) Development of concepts in collaboration with end-users to ensure desirability; (3) Detailing of final prototype with quick review rounds by end-users to create a positive user-experience. This study will be conducted in the Netherlands, Germany, Czech Republic, Italy, and Ireland to develop and test a multilingual platform that is suitable in different healthcare systems and cultural contexts.Discussion: Following the principles of UCD, an innovative European eHealth platform will be developed that addresses the needs and wishes of HDGECs, partners and HCPs. This allows for high-quality, tailored care to be moved partially into the participants' home, thereby circumventing some barriers in current HD care provision. By actively involving end-users in all design decisions, the platform will be tailored to the end-users' unique requirements, which can be considered pivotal in eHealth services for a disease as complex and rare as HD.

Un/Paid Labor: Medicaid Home and Community Based Services Waivers That Pay Family as Personal Care Providers

2016 ◽  
Vol 54 (4) ◽  
pp. 233-244 ◽  
Author(s):  
Carli Friedman ◽  
Mary C. Rizzolo
Keyword(s):  
Family Caregivers ◽  
Care Service ◽  
The United States ◽  
Fiscal Year ◽  
Care Providers ◽  
Personal Care ◽  
Informal Labor ◽  
Care Services ◽  
Paid Labor ◽  
Services And Supports

Abstract The United States long-term services and supports system is built on largely unpaid (informal) labor. There are a number of benefits to allowing family caregivers to serve as paid personal care providers including better health and satisfaction outcomes, expanded workforces, and cost effectiveness. The purpose of this study was to examine how Medicaid HCBS Section 1915(c) waivers for people with intellectual and developmental disabilities allocate personal care services to pay family caregivers. Our analysis revealed about two thirds of waivers in fiscal year (FY) 2014 allowed for family caregivers to potentially be paid for personal care services. This amounted to up to $2.71 billion of projected spending, which is slightly more than half of all personal care service expenditures in FY 2014.

scholarly journals User-Centered Design of a Web-Based Tool to Support Management of Chemotherapy-Related Toxicities in Cancer Patients (Preprint)

2018 ◽  
Author(s):  
Rebecca M Prince ◽  
Anthony Soung Yee ◽  
Laura Parente ◽  
Katherine A Enright ◽  
Eva Grunfeld ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Health Care Providers ◽  
Primary Care Physicians ◽  
Usability Testing ◽  
Self Management ◽  
User Centered Design ◽  
Care Providers ◽  
Web Based ◽  
Management Advice ◽  
User Centered

BACKGROUND Cancer patients receiving chemotherapy have high symptom needs that can negatively impact quality of life and result in high rates of unplanned acute care visits. Remote monitoring tools may improve symptom management in this patient population. OBJECTIVE This study aimed to design a prototype tool to facilitate remote management of chemotherapy-related toxicities. METHODS User needs were assessed using a participatory, user-centered design methodology that included field observation, interviews, and focus groups, and then analyzed using affinity diagramming. Participants included oncology patients, caregivers, and health care providers (HCPs) including medical oncologists, oncology nurses, primary care physicians, and pharmacists in Ontario, Canada. Overarching themes informed development of a Web-based prototype, which was further refined over 2 rounds of usability testing with end users. RESULTS Overarching themes were derived from needs assessments, which included 14 patients, 1 caregiver, and 12 HCPs. Themes common to both patients and HCPs included gaps and barriers in current systems, need for decision aids, improved communication and options in care delivery, secure access to credible and timely information, and integration into existing systems. In addition, patients identified missed opportunities, care not meeting their needs, feeling overwhelmed and anxious, and wanting to be more empowered. HCPs identified accountability for patient management as an issue. These themes informed development of a Web-based prototype (bridges), which included toxicity tracking, self-management advice, and HCP communication functionalities. Usability testing with 11 patients and 11 HCPs was generally positive; however, identified challenges included tool integration into existing workflows, need for standardized toxicity self-management advice, issues of privacy and consent, and patient-tailored information. CONCLUSIONS Web-based tools integrating just-in-time self-management advice and HCP support into routine care may address gaps in systems for managing chemotherapy-related toxicities. Attention to the integration of new electronic tools into self-care by patients and practice was a strong theme for both patients and HCP participants and is a key issue that needs to be addressed for wide-scale adoption.

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