Caregiver Resources Research Articles

Decision support framework for home health caregiver allocation using optimally tuned spectral clustering and genetic algorithm

Population aging is a global challenge, leading to increased demand for health care and social services for the elderly. Home Health Care (HHC) is a vital solution to serve this segment of the population. Given the increasing demand for HHC, it is essential to coordinate and regulate caregiver allocation efficiently. This is crucial for both budget-optimized planning and ensuring the delivery of high-quality care. This research addresses a fundamental question in home health agencies (HHAs): “How can caregiver allocation be optimized, especially when caregivers prefer flexibility in their visit sequences?”. While earlier studies proposed rigid visiting sequences, our study introduces a decision support framework that allocates caregivers through a hybrid method that considers the flexibility in visiting sequences and aims to reduce travel mileage, increase the number of visits per planning period, and maintain the continuity of care – a critical metric for patient satisfaction. Utilizing data from an HHA in Tennessee, United States, our approach led to an impressive reduction in average travel mileage (up to 42%, depending on discipline) without imposing restrictions on caregivers. Furthermore, the proposed framework is used for caregivers’ supply analysis to provide valuable insights into caregiver resource management.

Educational Inequalities in Dual-Function Life Expectancy.

This study investigates educational inequalities in dual functionality, a new concept that captures a combination of physical and cognitive functioning, both of which are important for independent living and quality of life. Using data from the Health and Retirement Study and the National Health Interview Study Linked Mortality Files, we define a measure of dual functionality based on the absence of limitations in activities of daily living and dementia. We estimate age-graded dual-function rates among adults 65+ and age-65 dual-function life expectancy across levels of education stratified by gender. In their mid 60s, 67 percent of women with less than a high school degree manifest dual functionality as compared with over 90 percent of women with at least a four-year college degree. A similar pattern holds among men. These education-based gaps in dual functionality remain across later life, even as dual-function rates decline at older ages. Lower dual-function rates among older adults with less education translate into inequalities of 6.7 and 7.3 years in age-65 dual-function life expectancy between men and women respectively with at least a four-year college degree compared to their counterparts with less than a high school degree. Older adults, particularly women, with less than a high school degree are estimated to live a smaller percentage of their remaining years with dual functionality compared with older adults with at least a college degree. These inequalities have implications for the distribution of caregiving resources of individuals, family members, and the broader health care community.

A peer mentoring program for Chinese American dementia caregivers: a pilot randomized controlled trial

Objectives A large gap exists in the development of culturally sensitive interventions to reduce stress related to dementia care among Chinese Americans, one of the fastest growing minority populations in the United States. We developed and pilot tested the feasibility and preliminary efficacy of a peer mentoring program for Chinese American dementia caregivers. Method A pilot randomized controlled trial was conducted among 38 Chinese American caregivers in New York City. Four outcome variables—caregiving competence, loneliness, caregiver burden, and depressive symptoms—were measured at baseline and 3-month and 9-month follow-ups. The study protocol and preliminary results are available at clinicltrial.gov [NCT04346745]. Results The feasibility of the intervention was high, as indicated by an acceptable retention rate, fidelity, and positive feedback from caregivers and mentors. Compared with the control group, the intervention group had greater reductions in scores for loneliness at 3-month follow-up and for caregiver burden and depressive symptoms at 9-month follow-up. We did not find significant differences in caregiving competence between the two groups. Conclusion The results indicated the high feasibility and potential efficacy of empowering existing human resources of experienced caregivers in the same ethnic community to improve the mental health of Chinese caregivers. Further research is needed to test the efficacy in a larger sample of this population.

Orchestrating Care: A Grounded Theory Study of Family Caregiving for Older Adults in Rural Areas.

Family caregivers provide the majority of long-term care and support of older adults as they age or approach the end of life. Studies often refer to family caregivers as invisible because the American healthcare system, public policy, and society do not support or recognize their work. Family caregivers who provide care to older adults who live in rural areas face unique challenges due to the rural environment. The purpose of this study was to inductively develop a theoretical framework that explains the process of family caregiving to older adults who live at home in rural areas and require daily assistance while exploring their experiences regarding access, utilization, challenges, and effectiveness of patient healthcare services and caregiver resources in rural areas. The grounded theory method of Strauss and Corbin was used for sampling, data collection, and data analysis. Fifteen family caregivers who oversaw and/or provided care on a daily basis to an older adult living in two rural counties of New York State participated in the study. Data were collected through two semi-structured interviews with each participant, yielding 30 interviews. Findings revealed that family caregivers engaged in the process of orchestrating care by growing into caregiving, integrating technology, and utilizing networks when providing and managing caregiving. Understanding caregiving from the perspective of family caregivers engaged in the process can inform healthcare practice, healthcare education, and public policy and can support better outcomes for both older adults and their family caregivers.

Development and Evaluation of a Clinician-Vetted Dementia Caregiver Resources Website: Mixed Methods Approach.

About 11 million Americans are caregivers for the 6.7 million Americans currently living with dementia. They provide over 18 billion hours of unpaid care per year, yet most have no formal dementia education or support. It is extremely difficult for clinicians to keep up with the demand for caregiver education, especially as dementia is neurodegenerative in nature, requiring different information at different stages of the disease process. In this digital age, caregivers often seek dementia information on the internet, but clinicians lack a single, reliable compendium of expert-approved digital resources to provide to dementia caregivers. Our aim was to create a dementia caregiver resources website to serve as a hub for user-friendly, high-quality, and expert-reviewed dementia educational resources that clinicians can easily supply to family caregivers of people with dementia. An interdisciplinary website development team (representing dementia experts from occupational therapy, nursing, social work, geriatrics, and neurology) went through 6 iterative steps of website development to ensure resource selection quality and eligibility rigor. Steps included (1) resource collection, (2) creation of eligibility criteria, (3) resource organization by topic, (4) additional content identification, (5) finalize resource selection, and (6) website testing and launch. Website visits were tracked, and a 20-item survey about website usability and utility was sent to Veterans Affairs tele-geriatrics interdisciplinary specialty care groups. Following website development, the dementia caregiver resource website was launched in February 2022. Over the first 9 months, the site averaged 1100 visits per month. The 3 subcategories with the highest number of visits were "general dementia information," "activities of daily living," and "self-care and support." Most (44/45, 98%) respondents agreed or strongly agreed that the website was easy to navigate, and all respondents agreed or strongly agreed that the resources were useful. The iterative process of creating the dementia caregiver resources website included continuous identification, categorization, and prioritization of resources, followed by clinician feedback on website usability, accessibility, and suggestions for improvement. The website received thousands of visits and positive clinician reviews in its first 9 months. Results demonstrate that an expert-vetted, nationally, and remotely available resource website allows for easy access to dementia education for clinicians to provide for their patients and caregivers. This process of website development can serve as a model for other clinical subspecialty groups seeking to create a comprehensive educational resource for populations who lack easy access to specialty care.

"Has Anyone Been There Now?": An Interview Study on the Support Experiences and Unmet Needs of Informal Long-Distance Caregivers for Patients at the End of Life.

In the German context, research is lacking on the support experiences and unmet needs of informal caregivers in end-of-life situations who are geographically distanced from their ill relatives. The current study aimed at deepening our understanding of the specific end-of-life support experiences and needs of informal long-distance caregivers. The study employed an explorative design, applying qualitative interviews. Thirty-three long-distance family caregivers participated in the study (December 2021-October 2022). The results showed that long-distance caregivers relied on close exchange and cooperation with local family and non-kin caregivers. They also expressed the wish to be considered more proactively by professional caregivers, with respect to their specific geographic situations. They further recommended that local care networks be built to support patients. Hypotheses were deduced from long-distance caregivers' recommendations for support interventions. The results may be useful for the development of an online information resource for long-distance caregivers in end-of-life situations.

Randomized controlled trial of a positive emotion regulation intervention to reduce stress in family caregivers of individuals with Alzheimer’s disease: protocol and design for the LEAF 2.0 study

BackgroundCaring for a loved one with Alzheimer’s disease can be stressful, resulting in poorer emotional and physical health among family caregivers. Although supportive resources for caregivers are available, distance, caregiver health, and the daily demands of caregiving are barriers to access. Based on research demonstrating the importance of positive emotions in coping with stress, our previous trial showed that dementia caregivers who participated in facilitated, web-based delivery of a positive emotion regulation intervention called LEAF (Life Enhancing Activities for Family caregivers) experienced increased positive emotion and decreased depression and anxiety. Building on this evidence, the LEAF 2.0 study aims to test whether web-based, self-guided delivery can confer similar benefits for caregivers of individuals with Alzheimer’s disease.MethodsThis paper presents the design and methods for LEAF 2.0, a 3-arm web-based randomized controlled trial (N = 500) in which family caregivers of patients with Alzheimer’s disease (AD) are randomized to (1) the LEAF intervention facilitated remotely via the web (N = 200), (2) the LEAF intervention self-guided online (N = 200), or (3) an emotion reporting control (N = 100), which then crosses over to the intervention after approximately 6 months, half to the facilitated arm and half to the self-guided arm. We aim to (1) compare the effect of the facilitated and self-guided LEAF positive emotion interventions to an emotion reporting control condition on AD caregiver well-being (positive emotion, depression, anxiety, and perceived stress) and secondary outcomes (caregiving burden, caregiving self-efficacy, positive aspects of caregiving, quality of care, and AD patient quality of life); (2) assess whether effects are mediated by improvements in positive emotion or other aspects of caregiver well-being; and (3) test whether caregiver age or gender or the care recipient’s dementia severity moderates the effects of the intervention.DiscussionIf demonstrated to be effective, LEAF can be widely disseminated and ultimately have a significant impact on the stress experienced by AD caregivers and the well-being of people living with Alzheimer’s disease.Trial RegistrationClinicalTrials.gov NCT03610698.

Asthma Academy for Family Caregivers: A Quality Improvement Project.

Background: Asthma affects one in every 12 children in United States with significant prevalence in underserved groups. Family caregiver education is essential to improve childhood asthma control. The literature suggests that family caregivers' lack of knowledge about asthma management affects their children's health outcomes. An evidence-based education program that improves caregivers' asthma knowledge may improve the family's well-being. Objectives: The goal of the Asthma Academy project is to improve the disease management of children with asthma by providing an in-person family caregiver education program. The main objectives are to (a) improve family caregivers' asthma knowledge, (b) enhance their confidence in asthma management, and (c) evaluate caregivers' satisfaction with the education program. Method: This quality improvement project used an in-person educational program with an asthma education video resource for caregivers of children with asthma. Results: The family caregivers' asthma knowledge improved significantly after the education. The confidence levels in caring for children with asthma increased. Caregivers' satisfaction with the Asthma Academy education session was favorable. Conclusions: The Asthma Academy was an acceptable and effective delivery method of education for family caregivers of children with asthma in the in-patient setting. Empowering family caregivers of vulnerable children through asthma education may improve child health outcomes and mitigate complications from asthma. Implications for Nursing Nurses and clinicians are steward of providing patient education. Individualized, patient-tailored education is recommended.

Honoring our teachings: children's storybooks as indigenous public health practice.

American Indian and Alaska Native (AIAN) communities continue to flourish and innovate in the face of the COVID-19 pandemic. Storytelling is an important tradition for AIAN communities that can function as an intervention modality. To support the needs of AIAN children and caregivers, we (a collaborative workgroup of Indigenous health researchers) developed a culturally grounded storybook that provides pandemic-related public health guidance and mental health coping strategies woven with Inter-Tribal values and teachings. A collaborative workgroup, representing diverse tribal affiliations, met via four virtual meetings in early 2021 to discuss evolving COVID-19 pandemic public health guidance, community experiences and responses to emerging challenges, and how to ground the story in shared AIAN cultural strengths. We developed and distributed a brief survey for caregivers to evaluate the resulting book. The workgroup iteratively reviewed versions of the storyline until reaching a consensus on the final text. An AI artist from the workgroup created illustrations to accompany the text. The resulting book, titled Our Smallest Warriors, Our Strongest Medicine: Honoring Our Teachings during COVID-19 contains 46 pages of text and full-color illustrations. An online toolkit including coloring pages, traditional language activities, and caregiver resources accompanies the book. We printed and distributed 50,024 physical copies of the book and a free online version remains available. An online survey completed by N = 34 caregivers who read the book with their child(ren) showed strong satisfaction with the book and interest in future books. The development of this storybook provides insights for creative dissemination of future public health initiatives, especially those geared toward AIAN communities. The positive reception and widespread interest in the storybook illustrate how braiding AIAN cultural teachings with public health guidance can be an effective way to disseminate health information. This storybook highlights the importance of storytelling as an immersive learning experience through which caregivers and children connect to family, community, culture, and public health guidance. Culturally grounded public health interventions can be effective and powerful in uplifting AIAN cultural values and promoting health and well-being for present and future generations.

Overcoming language barriers in pediatric care: a multilingual, AI-driven curriculum for global healthcare education.

Online medical education often faces challenges related to communication and comprehension barriers, particularly when the instructional language differs from the healthcare providers' and caregivers' native languages. Our study addresses these challenges within pediatric healthcare by employing generative language models to produce a linguistically tailored, multilingual curriculum that covers the topics of team training, surgical procedures, perioperative care, patient journeys, and educational resources for healthcare providers and caregivers. An interdisciplinary group formulated a video curriculum in English, addressing the nuanced challenges of pediatric healthcare. Subsequently, it was translated into Spanish, primarily emphasizing Latin American demographics, utilizing OpenAI's GPT-4. Videos were enriched with synthetic voice profiles of native speakers to uphold the consistency of the narrative. We created a collection of 45 multilingual video modules, each ranging from 3 to 8 min in length and covering essential topics such as teamwork, how to improve interpersonal communication, "How I Do It" surgical procedures, as well as focused topics in anesthesia, intensive care unit care, ward nursing, and transitions from hospital to home. Through AI-driven translation, this comprehensive collection ensures global accessibility and offers healthcare professionals and caregivers a linguistically inclusive resource for elevating standards of pediatric care worldwide. This development of multilingual educational content marks a progressive step toward global standardization of pediatric care. By utilizing advanced language models for translation, we ensure that the curriculum is inclusive and accessible. This initiative aligns well with the World Health Organization's Digital Health Guidelines, advocating for digitally enabled healthcare education.

Caregiving for dementia: trends pre-post onset and predictive factors of family caregiving (2002-2018).

Persons living with Alzheimer's and other related forms of dementia rely heavily on care from family and friends for assistance with daily activities ("family care"), but little is known about care transitions over time. We analyzed data from the Health and Retirement Study to describe caregiving patterns, from 2 years before dementia onset and up to 6 years after. Using sociodemographic data from the interview prior to dementia onset, we determined if there are significant factors that predict receipt of family care at dementia onset. We found that one-third (33%) of people living with dementia were receiving help with daily activities 2 years prior to their first positive dementia screen and this increased to 60% during the first positive screen. Nearly all of those receiving assistance received family care. We found multiple significant predictors of receiving family care at onset, including race, education, access to private health insurance, number of activities of daily living that were difficult, number of chronic conditions, and already receiving help. This demonstrates potential gaps in dementia care, and which subpopulations may benefit most from targeted interventions for household members who do not have adequate caregiving resources or programs that provide additional formal care.

"I Am Half of a Person": Lived Experiences of Individuals Living With Ostomy After Surgery in Rural Haiti.

Intestinal ostomy can have significant effects on lives and lived experiences. However, limited research exists on the experiences of persons with ostomy in low-resource settings, such as rural Haiti. This study aimed to explore the lived experiences of Haitians with an ostomy, focusing on the physical, psychological, and social aspects of their post-operative lives. We conducted 9 semi-structured, in-depth interviews with participants who had undergone ostomy surgery at the Hôpital Universitaire de Mirebalais in Haiti. Employing interpretative phenomenological analysis (IPA), we iteratively examined transcripts to identify convergent and divergent codes, which were then grouped into themes to better understand the participants' experiences. Three themes emerged: (a) ostomy as a social disease, which has severe impacts on relationships and place in society; (b) ostomy as altering self-image, leading participants to reflect on their identity and the underlying causes of their condition and to reevaluate their necessities and abilities; and (c) ostomy as an arduous medical journey, characterized by pain, distress, uncertainty, and disillusionment, but also resiliency, improvisation, and hope. This study highlights the multifaceted experiences of persons with ostomy in the low-resource rural environment of Haiti and underscores the need for improved access to medical care, financial support, and psychosocial and caregiving resources for these individuals. Findings also emphasize the importance of medical providers' improved understanding in making medical decisions, and cultural and socioeconomic factors in developing effective support strategies.

Developing “The Health After Cancer Podcast” to amplify cancer survivors’ voices through digital storytelling

BackgroundCancer survivors experience complex medical and psychosocial challenges after a cancer diagnosis, leading to unmet informational and emotional needs. There is a paucity of cancer survivorship educational resources co-created by survivors and medical professionals. ObjectiveOur aim was to create an educational resource for cancer survivors, caregivers, and medical professionals that would leverage digital storytelling to address survivorship topics. Patient involvementOur content and production team included cancer survivors, clinicians, educators, and design experts. All content was co-created by cancer survivors and medical experts. MethodsWe conducted an environmental scan of existing cancer survivorship educational resources in academic and public domains. Applying human-centered design principles, we incorporated patient perspectives through advisory board meetings and focus groups and identified a podcast as the preferred medium. We selected content and speakers, produced the podcast, and developed a corresponding website. ResultsBased on patient recommendations, podcast episodes address mental health, fear of cancer recurrence, relationships, parenting, relating to a new body, care transitions for adult survivors of childhood cancer, disclosing health information, and financial burden of cancer. Podcast guests were invited based on lived or learned experience in these domains. Thirteen guests (survivors, experts) and four hosts (two cancer survivors, two oncologists) co-created 15 podcast episodes. Podcast guests found the storytelling experience to be powerful and therapeutic. DiscussionDigital storytelling is a scalable and accessible educational tool for communicating complex survivorship concepts that can amplify survivors’ voices and increase awareness among survivors and clinicians. Co-creation of educational resources for cancer survivorship by survivors and professionals is a feasible and innovative educational strategy. Practical ValueA podcast created by and for cancer survivors in partnership with medical experts highlights opportunities for peer-to-peer digital storytelling to foster community among survivors and caregivers. FundingPodcast production was supported by the Stanford Comprehensive Cancer Center.

Information exchange on adolescent scoliosis discussion forums among patients and caregivers: a thematic analysis.

Online health-related support groups have increasingly become a regular resource for patients and caregivers; however, the content of these forums is largely unknown to medical teams. The purposes of this study were to (1) review posts from scoliosis discussion forums to establish common themes related to the care experience of patients with scoliosis and (2) understand how common themes vary among pediatric and adult patients, as well as caregivers. Posts were collected from two public scoliosis forums. Analysis was performed using grounded theory-a methodology that relies on the repeated analyses of qualitative data to identify recurring concepts, which are then coded and grouped into categories and ultimately central themes that seek to synthesize the relationships between categories. Information posts were reviewed by a board-certified orthopedic surgeon who performs scoliosis surgery for factual basis or misinformation. Analysis of 911 posts revealed five central themes. The two most common themes among patients ≥ 18 and caregivers involve seeking out emotional support and information about surgical treatment. Patients < 18 frequently sought out emotional support but were also largely interested in information about bracing. The most prevalent theme among all contributors involved seeking out emotional support. There was very little medical misinformation found within posts. Scoliosis forums serve as an informal outlet where patients and families can offer emotional support and share experiences. Physicians should provide direct emotional support to patients and offer these forums as a resource, without significant concerns about propagating medical misinformation.

Measuring the intangible resources caregivers need to provide nurturing care during the complementary feeding period: a scoping review in low- and lower-middle-income countries.

Caregivers require tangible (e.g. food and financial) and intangible resources to provide care to ensure child health, nutrition and development. Intangible resources include beliefs and knowledge, education, self-efficacy, perceived physical health, mental health, healthy stress levels, social support, empowerment, equitable gender attitudes, safety and security and time sufficiency. These intangible caregiver resources are included as intermediate outcomes in nutrition conceptual frameworks yet are rarely measured as part of maternal and child nutrition research or evaluations. To facilitate their measurement, this scoping review focused on understudied caregiver resources that have been measured during the complementary feeding period in low- and lower-middle-income countries. We screened 9,232 abstracts, reviewed 277 full-text articles and included 163 articles that measured caregiver resources related to complementary feeding or the nutritional status of children 6 months to 2 years of age. We identified measures of each caregiver resource, though the number of measures and quality of descriptions varied widely. Most articles (77 %) measured only one caregiver resource, mental health (n 83) and social support (n 54) most frequently. Psychometric properties were often reported for mental health measures, but less commonly for other constructs. Few studies reported adapting measures for specific contexts. Existing measures for mental health, equitable gender attitudes, safety and security and time sufficiency were commonly used; other constructs lacked standardised measures. Measurement of caregiver resources during the complementary feeding period is limited. Measuring caregiver resources is essential for prioritising caregivers and understanding how resources influence child care, feeding and nutrition.

Mental health impact of the COVID-19 pandemic on patients with neurodegenerative diseases and perceived family caregiver burden in Lima, Peru.

Neurodegenerative diseases lead to difficulties with functional activities. In Peru, most caregivers are family members. Little is known about the COVID-19 pandemic's effect on caregivers in Peru. This was a cross-sectional, prospective study of family caregivers of dependent patients with dementia or Parkinson's Disease in Lima, Peru. A caregiver burden and mental health questionnaire was administered to the caregiver. We enrolled 48 caregivers (65% females, mean ± SD age 49.0 ± 12.3 years); 70% of patients had dementia. Nearly 40% of caregivers reported having full-time jobs, and 82% felt overwhelmed with almost 75% dedicating more time to caregiving during the pandemic. Caregivers perceived patients felt lonelier (52%), had an increase in hallucinations (50%), or forgetfulness (71%) compared to pre-pandemic. Our study highlights that perceived caregiver burden and patient behavioral symptoms may have been exacerbated during the pandemic. In countries such as Peru, more caregiving resources and interventions are needed.

An integrated action plan to fund and support drug development for Dup15q syndrome: a patient organization perspective.

Maternal 15q11.2-13.1 duplication syndrome, or Dup15q syndrome (Dup15q), is a rare neurodevelopmental disorder affecting as many as 1 in 5000 to 1 in 20,000 children worldwide. Autism and seizures are two of the most commonly observed phenotypes in Dup15q, with intellectual disability, hypotonia, gastrointestinal distress, and substantial fine and gross motor deficits also commonly reported. The community that is now known as the Dup15q Alliance started in 1994 as a small group of families raising children with chromosome 15q duplications. Originally named IsoDicentric 15 Exchange, Advocacy and Support (IDEAS), the group received official nonprofit organization status 10 years later and rebranded to its current name, Dup15q Alliance, shortly thereafter. Today, there are over 2200 families affiliated with Dup15q Alliance, with an average intake of 10 new families each month. Historically, Dup15q Alliance has provided the community with access to family and caregiver resources in addition to serving as a repository for basic educational information about Dup15q and research developments. The recent installation of a dedicated director of scientific and clinical initiatives alongside other infrastructural changes has now primed the Dup15q Alliance to expand its scientific footprint by funding cutting-edge research, supporting clinical sites and trials, and investing in novel therapeutics that have the potential to change the reality of a Dup15q syndrome diagnosis. To do this, we have developed the LEARN. TREAT. CURE. program to align initiatives, fast-track progress, and bring hope and reality into coexistence. Briefly, we seek to learn as much as we can about the syndrome through cutting-edge research, natural history studies, and patient registry utilization, identify and develop methods to treat the symptoms of our patient community, with the ultimate goal of developing a cure for the disease-causing symptoms of the syndrome.

The Meaning of Family's Adaptation Experiences Among Schizophrenia Caregivers in the Tidal Flood Areas in Indonesia: A Phenomenology Study.

Caring for patients who have schizophrenia in tidal floods requires more effort than patients who have schizophrenia in non-tidal flood areas. Family caregivers are required to manage stress and burden through adaptation to roles and the environment. The purpose of this study was to explore the meaning of family adaptation experiences of those who care for patients with schizophrenia in a tidal flood area. This research is a qualitative research with a descriptive phenomenology. The sampling technique used purposive sampling, and the number of participants was 10. The data collection used in-depth interview techniques. The Colaizzi method was used to analyze data. The adaptation experience meaning of family caregivers obtained four themes: (1) forms of family caregiver responses; (2) patient engagement as a way to provide quality care at home by family caregivers; (3) family caregivers' difficulties in utilizing health services; and (4) resources for family caregivers. The meaning of adaptation is whether the family caregivers feel the impact of their role and have difficulty utilizing health services in caring for patients. Despite this, family caregivers still try to continue to involve patients in daily activities and look for sources of support that are useful for them. The physical and psychological well-being of family caregivers also need to be improved to support optimal care for patients who have schizophrenia by family caregivers at home.

Translation and Validation of Family Stigma Stress Scale (FSSS) Among Caregivers of Patients With Mental Illness in Pakistan

The stigma among caregivers is significantly creating stress for them, which is ultimately disturbing their well‐being and quality of life. The aim of the current study is to translate and validate the Family Stigma Stress Scale (FSSS) in Urdu among caregivers of patients with mental illness in Pakistan. A purposive sample of 421 caregivers above 18 years of age (M = 39.43, SD = 12.41) participated in the present research, where 42.3% were men and 57.7% were women. All the participants completed FSSS and self‐structured demographic sheet. For translating the scale, WHO guidelines were followed. Data were analysed through SPSS version 26 and AMOS version 24. To test the internal consistency of the translated scale, we apply the alpha reliability test. The result indicated that the internal consistency of the overall FSSS is good (α = 0.85), while its subscale perceived harm (α = 0.90) and perceived coping resources (α = 0.87) also showed excellent internal consistency. To check that the translated version confirmed the same items, we applied confirmatory factor analysis (CFA) through AMOS version 24. The results of CFA showed that the model is in the acceptable to good fit range with χ2/df (3.16), CFI (0.98), TLI (0.97), IFI (0.98), NFI (0.97), and RMSEA (0.07). An independent sample t‐test was used to check the gender difference and illness differences related to caregiving on subscales of FSSS. Results of t‐test showed that significant gender differences were observed only on perceived harm indicating that women caregivers perceived more harm as compared to men caregivers of patients with mental illness. Moreover, we also found that caregivers of patients with psychotic disorders perceived more coping resources than caregivers of patients with neurotic disorders. By integrating the FSSS into routine assessments and screenings in healthcare settings, professionals can identify caregivers experiencing high levels of stigma‐related stress accurately. Healthcare professionals can advocate for policies and social programs that reduce stigma surrounding mental illness and provide resources for caregivers. Apart from these implications, there are some limitations in the present research, and this scale may not fully account for cultural sensitivity which potentially impacts the scale’s applicability and generalizability. Participants may provide socially desirable responses, especially when dealing with sensitive topics like family stigma. This response bias can affect the accuracy and validity of the scale. Future researchers should focus on these limitations and try to fill these gaps.

Satisfaction of telehealth implementation in a pediatric feeding clinic

&lt;abstract&gt;&lt;sec&gt; &lt;title&gt;Objectives&lt;/title&gt; &lt;p&gt;Telehealth services became commonplace during the COVID-19 pandemic and were widely reported to improve access to medical care in a variety of settings. The primary aim of this study was to assess patient- and provider-reported satisfaction with telehealth services within a multidisciplinary outpatient program for children with feeding disorders.&lt;/p&gt; &lt;/sec&gt;&lt;sec&gt; &lt;title&gt;Methods&lt;/title&gt; &lt;p&gt;Caregivers and healthcare providers who participated in telehealth multidisciplinary visits within an outpatient pediatric feeding disorders clinic between April and June 2020 completed an online survey that assessed their visit satisfaction. The visit completion rates of in-person 2019 and virtual 2020 visits were compared.&lt;/p&gt; &lt;/sec&gt;&lt;sec&gt; &lt;title&gt;Results&lt;/title&gt; &lt;p&gt;Thirty-six caregivers of children between 1-month and 8-years-old completed the survey. Caregivers indicated their overall satisfaction with telehealth services, finding it more convenient than seeing specialists in person. Caregivers demonstrated interest in continuing telehealth visits. Providers indicated being satisfied with the telehealth visits, with many noting that they were as effective as in-person visits. There was an increase in the number of in-person visits between 2019 compared to virtual visits in 2020, though there were no differences for the visit completion rates.&lt;/p&gt; &lt;/sec&gt;&lt;sec&gt; &lt;title&gt;Conclusions&lt;/title&gt; &lt;p&gt;Both caregivers and providers were satisfied with the telehealth services and highlighted various benefits in response to open-ended questions. However, there were concerns with the lack of available anthropometric data and measurements. Although there were no differences in the no-show rates following the implementation of telehealth, there was a significant increase in the total number of completed visits. Telehealth visits are a crucial resource for caregivers and providers in multidisciplinary pediatric feeding clinics, yet enhancing anthropometric measurements is necessary to provide quality care.&lt;/p&gt; &lt;/sec&gt;&lt;/abstract&gt;