scholarly journals Dyadic Psychosocial eHealth Interventions: Systematic Scoping Review (Preprint)

2019 ◽  
Author(s):  
Kelly M Shaffer ◽  
Ashley Tigershtrom ◽  
Hoda Badr ◽  
Stephanie Benvengo ◽  
Marisol Hernandez ◽  
...  
Keyword(s):  
Scoping Review ◽  
Family Members ◽  
Intervention Development ◽  
Psychosocial Interventions ◽  
Care Recipient ◽  
Adult Care ◽  
Comprehensive Overview ◽  
Eligibility Criteria ◽  
Care Recipients ◽  
Ehealth Intervention

BACKGROUND Dyadic psychosocial interventions have been found beneficial both for people coping with mental or physical health conditions as well as their family members and friends who provide them with support. Delivering these interventions via electronic health (eHealth) may help increase their scalability. OBJECTIVE This scoping review aimed to provide the first comprehensive overview of dyadic eHealth interventions for individuals of all ages affected by mental or physical illness and their family members or friends who support them. The goal was to understand how dyadic eHealth interventions have been used and to highlight areas of research needed to advance dyadic eHealth intervention development and dissemination. METHODS A comprehensive electronic literature search of PubMed, EMBASE, Cochrane, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO was conducted for articles published in the English language through March 2019. Eligible records described a psychosocial eHealth intervention that intervened with both care recipients and their support person. RESULTS A total of 7113 records were reviewed of which 101 met eligibility criteria. There were 52 unique dyadic eHealth interventions identified, which were tested across 73 different trials. Of the unique interventions, 33 were conducted among dyads of children and their supporting parent, 1 was conducted with an adolescent-young adult care recipient population, and the remaining 18 were conducted among adult dyads. Interventions targeting pediatric dyads most commonly addressed a mental health condition (n=10); interventions targeting adult dyads most commonly addressed cancer (n=9). More than three-fourths of interventions (n=40) required some human support from research staff or clinicians. Most studies (n=64) specified one or more primary outcomes for care recipients, whereas less than one-fourth (n=22) specified primary outcomes for support persons. Where specified, primary outcomes were most commonly self-reported psychosocial or health factors for both care recipients (n=43) and support persons (n=18). Results of the dyadic eHealth intervention tended to be positive for care recipients, but evidence of effects for support persons was limited because of few studies specifying primary outcomes for supporters. Trials of dyadic eHealth interventions were most commonly randomized controlled trials (RCTs; n=44), and RCTs most commonly compared the dyadic eHealth intervention to usual care alone (n=22). CONCLUSIONS This first comprehensive review of dyadic eHealth interventions demonstrates that there is substantial, diverse, and growing literature supporting this interventional approach. However, several significant gaps were identified. Few studies were designed to evaluate the unique effects of dyadic interventions relative to individual interventions. There was also limited assessment and reporting of outcomes for support persons, and there were no interventions meeting our eligibility criteria specifically targeting the needs of older adult dyads. Findings highlight areas of research opportunities for developing dyadic eHealth interventions for novel populations and for increasing access to dyadic care.

scholarly journals Dyadic Psychosocial eHealth Interventions: Systematic Scoping Review

10.2196/15509 ◽  
2020 ◽  
Vol 22 (3) ◽  
pp. e15509 ◽  
Author(s):  
Kelly M Shaffer ◽  
Ashley Tigershtrom ◽  
Hoda Badr ◽  
Stephanie Benvengo ◽  
Marisol Hernandez ◽  
...  
Keyword(s):  
Scoping Review ◽  
Family Members ◽  
Intervention Development ◽  
Psychosocial Interventions ◽  
Care Recipient ◽  
Adult Care ◽  
Comprehensive Overview ◽  
Eligibility Criteria ◽  
Care Recipients ◽  
Ehealth Intervention

Background Dyadic psychosocial interventions have been found beneficial both for people coping with mental or physical health conditions as well as their family members and friends who provide them with support. Delivering these interventions via electronic health (eHealth) may help increase their scalability. Objective This scoping review aimed to provide the first comprehensive overview of dyadic eHealth interventions for individuals of all ages affected by mental or physical illness and their family members or friends who support them. The goal was to understand how dyadic eHealth interventions have been used and to highlight areas of research needed to advance dyadic eHealth intervention development and dissemination. Methods A comprehensive electronic literature search of PubMed, EMBASE, Cochrane, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO was conducted for articles published in the English language through March 2019. Eligible records described a psychosocial eHealth intervention that intervened with both care recipients and their support person. Results A total of 7113 records were reviewed of which 101 met eligibility criteria. There were 52 unique dyadic eHealth interventions identified, which were tested across 73 different trials. Of the unique interventions, 33 were conducted among dyads of children and their supporting parent, 1 was conducted with an adolescent-young adult care recipient population, and the remaining 18 were conducted among adult dyads. Interventions targeting pediatric dyads most commonly addressed a mental health condition (n=10); interventions targeting adult dyads most commonly addressed cancer (n=9). More than three-fourths of interventions (n=40) required some human support from research staff or clinicians. Most studies (n=64) specified one or more primary outcomes for care recipients, whereas less than one-fourth (n=22) specified primary outcomes for support persons. Where specified, primary outcomes were most commonly self-reported psychosocial or health factors for both care recipients (n=43) and support persons (n=18). Results of the dyadic eHealth intervention tended to be positive for care recipients, but evidence of effects for support persons was limited because of few studies specifying primary outcomes for supporters. Trials of dyadic eHealth interventions were most commonly randomized controlled trials (RCTs; n=44), and RCTs most commonly compared the dyadic eHealth intervention to usual care alone (n=22). Conclusions This first comprehensive review of dyadic eHealth interventions demonstrates that there is substantial, diverse, and growing literature supporting this interventional approach. However, several significant gaps were identified. Few studies were designed to evaluate the unique effects of dyadic interventions relative to individual interventions. There was also limited assessment and reporting of outcomes for support persons, and there were no interventions meeting our eligibility criteria specifically targeting the needs of older adult dyads. Findings highlight areas of research opportunities for developing dyadic eHealth interventions for novel populations and for increasing access to dyadic care.

Establishing a Working Definition of User Experience for eHealth Interventions: A Scoping Review of Self-Reported User Experience Measures and Delphi Consultation with eHealth Researchers and Adolescents (Preprint)

2020 ◽  
Author(s):  
Amanda S Newton ◽  
Sonja March ◽  
Nicole D Gehring ◽  
Arlen K Rowe ◽  
Ashley D Radomski
Keyword(s):  
User Experience ◽  
Scoping Review ◽  
Descriptive Analysis ◽  
Intervention Development ◽  
Health Condition ◽  
Working Definition ◽  
Perceived Impact ◽  
Behavioural Factors ◽  
Definition Of ◽  
Ehealth Intervention

BACKGROUND Across eHealth intervention studies involving children, adolescents, and their parents, researchers have measured users’ experiences to assist with intervention development, refinement, and evaluation. To date, there are no widely agreed-on definitions or measures of ‘user experience’ to support a standardized approach for evaluation and comparison within or across interventions. OBJECTIVE We conducted a scoping review with subsequent Delphi consultation to (1) identify how user experience is defined and measured in eHealth research studies, (2) characterize the measurement tools used, and (3) establish working definitions for domains of user experience that could be used in future eHealth evaluations. METHODS We systematically searched electronic databases for published and gray literature available from January 1, 2005 to April 11, 2019. Studies assessing an eHealth intervention that targeted any health condition and was designed for use by children, adolescents, and their parents were eligible for inclusion. eHealth interventions needed to be web-, computer-, or mobile-based, mediated by the internet with some degree of interactivity. Studies were also required to report the measurement of ‘user experience’ as first-person experiences, involving cognitive and behavioural factors, reported by intervention users. Two reviewers independently screened studies for relevance and appraised the quality of user experience measures using published criteria: ‘well-established’, ‘approaching well-established’, ‘promising’, or ‘not yet established’. We conducted a descriptive analysis of how user experience was defined and measured in each study. Review findings subsequently informed the survey questions used in the Delphi consultations with eHealth researchers and adolescent users for how user experience should be defined and measured. RESULTS Of the 8,634 articles screened for eligibility, 129 and one erratum were included in the review. Thirty eHealth researchers and 27 adolescents participated in the Delphi consultations. Based on the literature and consultations, we proposed working definitions for six main user experience domains: acceptability, satisfaction, credibility, usability, user-reported adherence, and perceived impact. While most studies incorporated a study-specific measure, we identified ten well-established measures to quantify five of the six domains of user experience (all except for self-reported adherence). Our adolescent and researcher participants ranked perceived impact as one of the most important domains of user experience and usability as one of the least important domains. Rankings between adolescents and researchers diverged for other domains. CONCLUSIONS Findings highlight the various ways user experience has been defined and measured across studies and what aspects are most valued by researchers and adolescent users. We propose incorporating the working definitions and available measures of user experience to support consistent evaluation and reporting of outcomes across studies. Future studies can refine the definitions and measurement of user experience, explore how user experience relates to other eHealth outcomes, and inform the design and use of human-centred eHealth interventions.

scholarly journals That's not my Robert! Identity maintenance and other warrants in family members' claims about mistreatment in old-age care

2009 ◽  
Vol 30 (4) ◽  
pp. 627-647 ◽  
Author(s):  
TOVE HARNETT ◽  
HÅKAN JÖNSON
Keyword(s):  
Old Age ◽  
Family Members ◽  
Care Staff ◽  
Care Recipient ◽  
Care Providers ◽  
Elder Mistreatment ◽  
Moral View ◽  
Staff Members ◽  
Care Recipients ◽  
Psychological Harm

ABSTRACTThis study has explored how family members of care recipients define and sustain claims of mistreatment in old-age care. Twenty-one informants were recruited from an association of relatives of care recipients in Sweden. Using argumentation analysis, four warrants about mistreatment were identified from the qualitative interview data: they referred to physical harm, psychological harm, social-care deficiencies and identity subversion. The first three categories are similar to those recognised in previous research on elder mistreatment, but the fourth, which is described in detail in the article, is less familiar: elder mistreatment as the violation of an older person's identity. The family members backed their claims about staff members' violation of a care recipient's persona or identity by using arguments that drew on their unique knowledge of the care recipient's appearance, daily routines and preferred activities. They also described their attempts to protect the dignity and identity of a care recipient, their fears of abuse, and actual cases of conflict and retribution by care staff. They consistently positioned themselves as guardians of identity through their claims of mistreatment. The study provides important knowledge about family members' moral view of elder mistreatment, which may enhance the understanding of conflicts between formal care providers and family members.

scholarly journals EMERGING ADULT CAREGIVERS: PERCEPTIONS OF OLDER ADULT CARE RECIPIENTS, QUALITY OF CONTACT, AND AGEISM

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S952-S952
Author(s):  
Anastasia E Canell ◽  
Grace Caskie
Keyword(s):  
Older Adults ◽  
Older Adult ◽  
Social Role ◽  
Emerging Adult ◽  
Care Recipient ◽  
Adult Care ◽  
Care Recipients ◽  
Adult Caregivers ◽  
Quality Of Contact

Abstract Approximately 12-18% of family caregivers to older adults in the U.S. are 18-25 years old (i.e., emerging adulthood), yet minimal research has focused on this subgroup of caregivers (Levine, 2005; Smyth, Blaxland, & Cass, 2011). Individuals’ perceptions of an older adult’s social role relate to their attitudes toward older adults as a group (Hummert, 1999; Kite & Wagner, 2002). However, whether perceptions that emerging adult caregivers hold of older adults are specific to the social role of “care-recipient” has not been studied. A sample of 210 informal caregivers (ages 18-25) were surveyed to collect qualitative responses regarding perceptions of an older adult care-recipient (age 65+) and to assess quality of contact with the care-recipient and ageist attitudes. Participants were asked to provide five adjectives describing their older adult care-recipient. Approximately 43% provided a set of adjectives in which 80%-100% were coded as positive adjectives (e.g., “active”, “wise”); similarly, half of the sample’s adjective sets contained 0%-25% negative adjectives (e.g., “helpless”, “obnoxious”). The quality of contact with the care-recipient was significantly correlated (p<.001) with the percentage of positive (r=.47) and negative (r=-.49) adjectives. Scores on the Fraboni Scale of Ageism were also significantly correlated (p<.01) with the percentage of positive (r=-.19) and negative (r=.20) adjectives. Overall, these emerging adult caregivers had generally positive perceptions of their older adult care-recipients, and these perceptions reflected the positive quality of contact with the care-recipient. Less ageist attitudes’ relationship with more positive and less negative perceptions may have implications for experiences within a caregiving dyad.

Understanding Burden in Caregivers of Adults With Dysphagia: A Systematic Review

2021 ◽  
pp. 1-16
Author(s):  
Daniella Rangira ◽  
Hiba Najeeb ◽  
Samantha E. Shune ◽  
Ashwini Namasivayam-MacDonald
Keyword(s):  
Older Adults ◽  
Caregiver Burden ◽  
Social Life ◽  
English Language ◽  
Community Dwelling ◽  
Care Recipient ◽  
Adult Care ◽  
Care Recipients ◽  
Meta Analyses ◽  
The Impact

Introduction: A previous review suggested that dysphagia is negatively associated with burden in caregivers of community-dwelling older adults. Other literature suggests similar patterns of burden may be found across adult patient populations. The current study, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, was conducted to determine the impact of dysphagia on caregivers of adults, regardless of etiology. Method: Five electronic databases were searched using terms based on a review by Namasivayam-MacDonald and Shune (2018) but included all adults rather than only older adults. Searches were limited to English-language empirical studies discussing caregiver burden, included caregivers of adult care recipients, had some care recipients with dysphagia, did not include palliative care, and published in a peer-reviewed journal. Results: The search yielded 1,112 unique abstracts, of which 17 were accepted. Across studies, caregiver burden was found to increase due to dysphagia in care recipients. Commonly reported dysphagia-related causes of burden included changes in meal preparation, disruption in lifestyle, effects on social life, lack of support, insertion of feeding tubes, and fear of aspiration. In general, dysphagia-related caregiver burden was a common experience across caregivers, regardless of patient population, caregiver age, and relationship between caregiver and care recipient. Meta-analyses suggest 71% of caregivers of adults with dysphagia experience some degree of burden. Conclusions: These findings support that dysphagia negatively impacts caregiver burden and suggests sources of burden that clinicians can address within dysphagia management to support caregivers. However, more research is needed to better delineate sources of burden, especially those specific to various dysphagia etiologies, to better meet the needs of our patients.

Effectiveness of Psychosocial Interventions for Family Members and Other Informal Support Persons of Individuals Who Have Made a Suicide Attempt

Crisis ◽  
2021 ◽  
Author(s):  
Karolina Krysinska ◽  
Karl Andriessen ◽  
Ingrid Ozols ◽  
Lennart Reifels ◽  
Jo Robinson ◽  
...  
Keyword(s):  
Suicide Attempt ◽  
Psychosocial Support ◽  
Meta Analysis ◽  
Family Members ◽  
Psychosocial Interventions ◽  
Poor Quality ◽  
Informal Support ◽  
Eligibility Criteria ◽  
Middle Income ◽  
Informal Carers

Abstract. Background: Individuals recovering from a suicide attempt may benefit from support provided by informal carers, that is, family members and other support persons, who may require support themselves. Aims: This systematic review aims to identify and synthesize available literature on the effectiveness of psychosocial interventions for this carer population. Method: A search of peer-reviewed literature in five databases was carried out. Studies using any design were eligible and results were synthesized using a narrative review. Results: Eight articles reporting on seven quantitative studies met the eligibility criteria. This included three studies on interventions designed specifically for informal carers and four studies on interventions designed for persons who have made a suicide attempt, and which involved their informal carers. Overall, informal carers were satisfied with support and psychosocial interventions they received. Interventions were related to some improvements in carers' mental health outcomes, lowered burden, and improved ability to provide care. There were mixed results regarding family functioning and quality of life. Limitations: No studies from lower- and middle-income countries were identified and the small number of heterogeneous studies precluded conducting a meta-analysis. Conclusion: Given the low number of studies and their overall poor quality, this review can only draw preliminary conclusions. More high-quality intervention studies are needed to formulate recommendations for effective psychosocial support for family members and other informal support persons after a suicide attempt.

scholarly journals A Systematic Scoping Review of Social, Educational, and Psychological Research on Individuals with Autism Spectrum Disorder and their Family Members in Arab Countries and Cultures

2020 ◽  
Vol 7 (4) ◽  
pp. 364-382 ◽  
Author(s):  
Barah Alallawi ◽  
Richard P. Hastings ◽  
Gemma Gray
Keyword(s):  
Autism Spectrum Disorder ◽  
Scoping Review ◽  
Family Members ◽  
Psychological Research ◽  
Autism Spectrum ◽  
Research Literature ◽  
Arab Countries ◽  
Cultural Dimensions ◽  
Spectrum Disorder ◽  
Eligibility Criteria

AbstractCultural dimensions of autism spectrum disorder (ASD) are relatively unexplored in the research literature. The current study is a systematic scoping review describing social, educational, and psychological research focused on individuals with ASD and their family members in Arab countries and cultures. Seventy studies met eligibility criteria. Most of the studies were from Jordan, Saudi Arabia, and Lebanon. Most of the identified research addressed three major domains: the prevalence of ASD and diagnosis issues, the experiences and outcomes for Arab caregivers of individuals with ASD, and social and communication behaviour of Arab individuals with ASD. There were significant gaps in research evidence base, including research on interventions and on ASD services. Overall, the included research was appraised as being of weak quality.

Health literacy of caregivers of adult care recipients: A systematic scoping review

2016 ◽  
Vol 26 (2) ◽  
Author(s):  
Eva Y. N. Yuen ◽  
Tess Knight ◽  
Lina A. Ricciardelli ◽  
Susan Burney
Keyword(s):  
Health Literacy ◽  
Scoping Review ◽  
Adult Care ◽  
Care Recipients

Fears come true: the experiences of older care recipients and their family members of live-in foreign home care workers

2009 ◽  
Vol 21 (4) ◽  
pp. 779-786 ◽  
Author(s):  
Liat Ayalon
Keyword(s):  
Home Care ◽  
Qualitative Interviews ◽  
Family Members ◽  
Home Care Services ◽  
Care Recipient ◽  
Care Services ◽  
Care Recipients ◽  
Care Workers ◽  
Home Care Workers ◽  
Care Worker

ABSTRACTBackground: Foreign home care services provided to frail older adults by individuals from the developing world are a global phenomenon. This study evaluated the challenges associated with live-in foreign home care from the perspective of older care recipients and their family members.Methods: Qualitative interviews were conducted with 23 family members and seven older care recipients. Interviews were analyzed thematically.Results: Three main themes were identified: (i) the intense fears associated with witnessing the decline of the older care recipient and the subsequent employment of a foreign home care worker; (ii) actual negative experiences within this caregiving setting; and (iii) the ways in which family members and older care recipients coped with these challenging experiences.Conclusions: The key to this caregiving arrangement is the establishment of trust. Yet, many care recipients experienced violations of trust that resulted in abuse and neglect, which served to further intensify fears and concerns about this caregiving arrangement. The same coping methods used to maintain this arrangement, despite fears and concerns, are the ones responsible for maintaining the older care recipient in an abusive situation.

scholarly journals A Review of the Involvement of Partners and Family Members in Psychosocial Interventions for Supporting Women at Risk of or Experiencing Perinatal Depression and Anxiety

2021 ◽  
Vol 18 (10) ◽  
pp. 5396
Author(s):  
Maria Noonan ◽  
Julie Jomeen ◽  
Owen Doody
Keyword(s):  
Mental Health ◽  
At Risk ◽  
Family Relationships ◽  
Perinatal Depression ◽  
Family Members ◽  
Psychosocial Interventions ◽  
Assessment Tools ◽  
Perinatal Mental Health ◽  
Depression And Anxiety ◽  
Eligibility Criteria

A maternal experience of perinatal mental health conditions can have serious short- and long-term consequences for child development and family relationships. Women with perinatal depression and/or anxiety are primarily supported by their partner/spouse and family. The aim of this review was to synthesise data from studies that have examined the inclusion of partners or family members in psychosocial interventions for women at risk of or experiencing perinatal depression and/or anxiety. A systematic search of five databases was conducted to identify literature published between 2010 and 2020. Nine empirical studies met the eligibility criteria and were independently assessed by two authors using the National Heart, Lung and Blood Institute Quality Assessment Tools and data were extracted and narratively synthesised guided by TIDieR (Template for Intervention Description and Replication) checklist. Eligible studies detailed diverse interventions facilitated by a variety of programme facilitators, with no central model of intervention or study outcome measures evident across the studies. All studies except one reported a significant change in maternal depression and anxiety scores. The interventions had limited evaluation of the woman’s, partner’s or family member’s experiences of involvement in the intervention. Further research is required to firmly establish the effectiveness of co-designed interventions to support the sustainable integration of such interventions into routine perinatal mental health services.

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