Follow-up care experience of patients with invasive meningococcal disease and their family caregivers: a qualitative study.

BACKGROUND: Clinical guidelines recommend systematic follow-up of patients surviving invasive meningococcal disease (IMD) to assess sequelae. However, little is known about survivors and family caregivers' experiences of the follow-up care. Study sought to explore IMD survivors' and their family caregivers' experiences after hospitalization for IMD and to identify unmet needs. METHODS: Semi-structured interviews were conducted with patients and family caregivers, identified through hospitals database. Interviews were audiotaped, transcribed and subject to a thematic analysis. NVivo software was used for data management and analysis. RESULTS: Eight IMD survivors and 14 family caregivers were interviewed. Three themes were identified from the data: (1) perception of patient and family caregiver on follow-up after IMD and role of healthcare professionals; (2) access to care and support; (3) relationship with healthcare professionals. Although most were satisfied with follow-up care after IMD, suggestions for improving the healthcare pathway were made relating information on potential sequelae and follow-up care, coordination, and access to psychological support. CONCLUSIONS: This study confirms the need for more structured follow-up care for patients suffering from IMD and their families which is currently limited and focused on physical recovery. Optimal follow-up should aim to provide sufficient information, emotional support and logistical support for patient and family caregivers. TRIAL REGISTRATION: Ethics Committee of University of Lyon, France (ref: 2022-06-23-002).

A Role-Needs Framework: Rethinking Support for Informal Caregivers for Alzheimer's Across the Global South and Global North.

OBJECTIVE: Caregivers play an essential role in supporting people with Alzheimer's disease globally. User-informed research is vital to developing trans-cultural guidelines for dementia support organisations. While coping strategies of caregivers are well researched, the 'coping-effectiveness' framework falls short of representing all caregiver needs. Our aim was to develop a robust and inclusive, globally applicable framework of caregiver-informed support needs. METHODS: In partnership with Alzheimer's Disease International and Roche, we conducted qualitative online semi-structured interviews with 34 family caregivers from the Global North (UK, US) and Global South (Brazil, South Africa) in the COVID-19 context. Participant-generated photographs helped encourage discussions of hidden contextual issues. Iterative inductive narrative analysis of interviews and photographs was carried out with input from global and national charity and industry sectors. RESULTS: We identified a framework of four cross-cultural caring approaches with implications for support: (1) Empathising, using emotion-focused strategies to develop strong expertise and coping skills, with time specific information, psychosocial and peer support needs. (2) Organising, using problem-focused strategies, with strong narratives of expertise and advocacy which benefited from early structured information and professional confirmation. (3) Non-identifying caregiving, where daily aspects of caring occurred without specialist knowledge and expertise, and caregivers sought assistance in managing disease-related support. (4) Reluctance, where struggling with unwanted caring responsibilities meant caregivers looked to professionals to carry out daily care. CONCLUSION: Our findings move beyond the 'coping-effectiveness' framework of support to suggest a novel 'role-needs' framework. Our approach supports inclusive ways of tailoring support to fit individual caregiver circumstances globally.

Low resilience is associated with worse health-related quality of life in caregivers of service members and veterans with traumatic brain injury: a longitudinal study.

PURPOSE: To examine [a] the association of caregiver health-related quality of life (HRQOL) and service member/veteran (SMV) neurobehavioral outcomes with caregiver resilience; [b] longitudinal change in resilience at the group and individual level; and [c] the magnitude of change at the individual level. METHODS: Caregivers (N = 232) of SMVs with traumatic brain injury completed a resilience measure, and 18 caregiver HRQOL and SMV neurobehavioral outcome measures at a baseline evaluation and follow-up evaluation three years later. Caregivers were divided into two resilience groups at baseline and follow-up: [1] Low Resilience (≤ 45 T, baseline n = 99, follow-up n = 93) and [2] High Resilience (> 45 T, baseline n = 133, follow-up n = 139). RESULTS: At baseline and follow-up, significant effects were found between Low and High Resilience groups for the majority of outcome measures. There were no significant differences in resilience from baseline to follow-up at the group-mean level. At the individual level, caregivers were classified into four longitudinal resilience groups: [1] Persistently Low Resilience (Baseline + Follow-up = Low Resilience, n = 60), [2] Reduced Resilience (Baseline = High Resilience + Follow-up = Low Resilience, n = 33), [3] Improved Resilience (Baseline = Low Resilience + Follow-up = High Resilience, n = 39), and [4] Persistently High Resilience (Baseline + Follow-up = High Resilience, n = 100). From baseline to follow-up, approximately a third of the Reduced and Improved Resilience groups reported a meaningful change in resilience (≥ 10 T). Nearly all of the Persistently High and Persistently Low Resilience groups did not report meaningful change in resilience (< 10 T). CONCLUSION: Resilience was not a fixed state for all caregivers. Early intervention may stall the negative caregiving stress-health trajectory and improve caregiver resilience.

Reliability and validity of the Turkish version of the Family Caregiver Medication Administration Hassles Scale.

BACKGROUND: The Family Caregiver Medication Administration Hassles Scale (FCMAHS) was developed to evaluate the hassles and concerns experienced by family caregivers in medication administration. OBJECTIVE: This study aimed to evaluate the reliability and validity of the Turkish version of the Family Caregiver Medication Administration Hassles Scale (FCMAHS-TR). METHODS: The FCMAHS-TR was developed after translation, cultural adaptation, and a pilot study. The cross-sectional study was conducted among family caregivers (≥18 years) in community pharmacies. Test-retest reliability analysis, exploratory factor analysis (EFA), and confirmatory factor analysis (CFA) were performed. Hypothesis testing was used for the assessment of construct validity. RESULTS: The majority (68.7%) of the family caregivers were female (n = 470). In the test-retest reliability analysis (n = 30), the ICC value was 0.917 (P < 0.001). In EFA analysis (n = 251), the Kaiser‒Meyer‒Olkin (KMO) measure was 0.799, 62.6% of the total variance was explained by five factors including eighteen items, and Cronbach's alpha was 0.836. According to CFA (n = 219), the root mean square error of approximation (RMSEA) was 0.0654, and the comparative fit index (CFI) was 0.918. In construct validity, family caregivers with low reading ability of health-related materials and with high care burden had significantly higher median scores for all the factors of the FCMAHS-TR (P < 0.05 for all). CONCLUSIONS: The FCMAHS-TR can be used to evaluate the hassle and concerns experienced by family caregivers in medication administration. This scale can be used by healthcare professionals to identify family caregivers who need individualized interventions for medication administration hassles.

Caregiving management needs and predictors for family caregivers of persons with dementia: a cross-sectional study.

BACKGROUND: Family caregivers of persons with dementia are faced with complex caregiving management needs. This study had two aims: (1) to identify caregiving management needs of family caregivers of persons with dementia and (2) identify any variables that might influence these needs. METHODS: This cross-sectional study recruited family caregivers of persons with dementia (N = 250) through referrals from clinicians at a dementia outpatient clinic in Northern Taiwan. Data were collected with a 32-item researcher-developed instrument, the Caregiving Management Needs Scale (CMNS), to identify management needs specific to family caregivers of persons with dementia. The CMNS was comprised of questions about the types of assistance or support family caregivers would like to receive to facilitate caregiving. RESULTS: CMNS scores indicated caregivers had moderate management needs. Caregivers of relatives with a moderate severity of dementia had significantly higher scores on the CMNS compared with caregivers of persons with very mild dementia (p < 0.01). Linear regression analysis indicated significant predictors of high caregiving management needs were caregivers who were female (p < 0.01), and persons with dementia with behavioral problems (p < 0.01), low scores for Activities of Daily Living (p < 0.01), regular medication adherence (p < 0.01), and use of long-term care services (p < 0.001) were significant (F[13, 236] = 7.12; p < 0.001; R2 = 28.2%). CONCLUSIONS: Understanding variables and predictors of caregiving management needs for family caregivers could reduce the complexity of caregiving. TRIAL REGISTRATION: ClinicalTrials.gov NCT05151185.

The Farsi version of Caregiver Preparedness Scale in Iranian family caregivers of the older adults undergoing hemodialysis: a psychometric study.

BACKGROUND: Enhancing preparedness of family caregivers and support for caregiving is essential for the mutual benefit of both caregivers and the well-being of those under their care. This study aimed to translate and evaluate psychometric properties of the Caregiver Preparedness Scale among family caregivers of older adults undergoing hemodialysis. METHODS: In this methodological study, 400 family caregivers of older adult patients undergoing hemodialysis enrolled to the study via convenience sampling method. The study was conducted in two stages: translation and psychometric evaluation. At first, the translation of the scale was done using Beaton et al. method. In the psychometric evaluation stage, quantitative face validity, content validity, item analysis and construct validity of the scale were evaluated. The internal consistency of the scale was assessed through the calculation of Cronbach's alpha, McDonald's omega, and average inter-item correlation coefficients. RESULTS: All items had an impact score greater than 1.5. The content validity ratio and the kappa coefficient for all items were above 0.75. In the item analysis, item 2, which had a correlation with the total score of less than 0.3, was removed. Following exploratory factor analysis, only one factor composed of all items (7 items) was extracted, explaining 75.7% of the total variance. This model had acceptable fit indices in confirmatory factor analysis. Cronbach's alpha and omega of 0.95 and an average inter-item correlation of 0.75 were obtained. CONCLUSIONS: The study results demonstrated that the Caregiver Preparedness Scale exhibits appropriate psychometric properties. Geriatric nurses can utilize this Scale for assessment of caregivers. This assessment can aid in decision-making regarding educational programs aimed at enhancing family caregiver preparedness.

Providing and receiving support through a tailor-made mobile app: a qualitative study on experience of professionals and family caregivers to persons with dementia.

BACKGROUND: The ageing population and the rise of persons with dementia (PWD) living at home have increased the need for support by family caregivers (FC). Research suggests that most FCs are unprepared for the complex role of informal caregiving. The use of mobile applications (apps) provide a cost-effective and efficient opportunity for community-based social care professionals to provide tailor-made support to FCs. The literature indicates that there are limited mobile apps available to meet the needs of the FCs to PWD living at home. The aim of this study was to explore how social care professionals and FCs to PWD living at home experience providing and receiving support through a tailor-made mobile app named STAV. METHODS: A qualitative descriptive design was applied. Data were collected through semi-structured interviews with 11 community-based social care professionals and 19 FCs of PWD living at home. The data were analyzed inductively using thematic analysis. RESULTS: The social care professionals and the FCs' experience of providing and receiving support through a mobile app was represented by the following themes: Accessibility to support - Bridging the gap, Engaging from a distance, and Limitations of the support. CONCLUSIONS: This study highlights the need for FCs to PWD to receive support that is tailor-made to their needs as caregivers. The findings from this study can help community-based social care providers plan and organize long-distance support for FCs to PWD living at home. The findings further support the use of a mobile app as a complement to traditional means of support for FCs to PWD which can facilitate their knowledge, awareness, and self-care management.

Knowledge sharing in virtual communities of practice of family caregivers of people with Alzheimer's.

INTRODUCTION: Knowledge sharing can only happen in the context of a trusting and supportive environment, such as evolves in communities of practice and their virtual equivalent, virtual communities of practice. The main objective of this study was to understand knowledge sharing between participants in a virtual community of practice of caregivers of people with Alzheimer's. METHODS: The authors designed their own mobile application, and two virtual communities of practice were created independently and differentiated by how they were moderated: one by an expert caregiver and the other by three health professionals. 38 caregivers and four moderators were involved in the study, which ran between July 2017 and April 2018. A total of 1925 messages were exchanged within the two communities and used as data in the study. Message data was analysed using LINKS (Leveraging Internet Networks for knowledge sharing). RESULTS: Participants were more motivated to acquire knowledge related to caring for the person with Alzheimer's rather than caring for themselves. The purpose of the messages was to inform others about the sender and not to seek answers. It seems that the interaction was more to socialise and to feel heard, than to gain information. Face to face meetings appear to have accelerated community development. On nearly every parameter, behaviour was significantly different in the two communities, reflecting the importance of the character of the moderator. Caring for oneself was a much stronger theme in the community that included health professionals. Experiential knowledge sharing was particularly strong in the group led by a caregiver. DISCUSSION: Caregivers adapted the virtual community of practice to their own needs and mainly shared social knowledge. This focus on social support, which seems to be more valued by the caregivers than information about the disease, was not an expected pattern. Virtual communities of practice where peers count on each other, function more as a support group, whereas those moderated by health professionals function more as a place to go to acquire information. The level of interactivity points to such communities being important for knowledge sharing not mere knowledge transfer.

Factors associated with quality of life among elderly patients with type 2 diabetes mellitus: the role of family caregivers.

BACKGROUND: As a long-term chronic disease, Type 2 diabetes mellitus (T2DM) patients' quality of life is affected by both themselves and his/ her close relatives, requiring comprehensive support from family members to ensure that patients are able to manage disease. The objective of this study is to investigate the relationship between caregivers' sense of coherence, caregiver competence, and T2DM patients' quality of life, as well as to explore the factors affecting patients with T2DM patients. METHODS: This investigation was a cross-sectional study. Between October 2022 and July 2023, 392 participant-caregiver dyads from two hospitals in Jinzhou City, Liaoning Province, were researched. Participants were investigated by General Characteristics Questionnaire, Modified Barthel Index (MBI), Diabetes Specific Quality of Life Scale (DSQLS), Sense of Coherence scale-13 (SOC-13), and Family Caregiver Task Inventory (FCTI). Data were statistically analyzed using SPSS 25. Univariate and multivariate linear regression analyses were used to identify the independent factors associated with the quality of life of elderly patients with T2DM. RESULTS: The average score of T2DM quality of life was 61.14 (SD = 7.37), quality of life was negatively correlated with sense of coherence (r=-0.344, P<0.01) and positively correlated with caregiver competence (r = 0.522, P<0.01). Furthermore, we found that age, disease duration, activities of daily living scores, sense of coherence, and caregiver competence scores were the main predictors of quality of life (R2 = 0.375, P < 0.001). CONCLUSIONS: This study found that high levels of sense of coherence and caregiver competence in family caregivers were associated with better quality of life for patients. Furthermore, we also found that good quality of life was also related to younger age, shorter disease duration, and less dependence. This study offers a feasible example for policymakers to improve the quality of life from the perspective of T2DM patients' family caregivers.

Uncovering perspectives on physical activity in nursing homes: a qualitative exploration of the experiences of healthcare professionals and family caregivers.

BACKGROUND: The ageing population has increased the demand for healthcare services. In Norway, community-based long-term care are prioritised, leading to fewer nursing home places. As a result, nursing home residents are now older and have more complex needs. Nearly 92% of nursing home residents are affected by cognitive impairments accompanied by neuropsychiatric symptoms (NPS) that affect their daily activity, physical function, cognition, and behaviour. Traditionally, pharmacological therapy has been the prevailing treatment for NPS. However, emerging evidence suggests that physical activity can serve as an alternative treatment approach. Physical activity has the potential to maintain physical independence and enhance the quality of life (QoL) for the residents. Despite these benefits, institutionalisation in a nursing home often restricts activity levels of residents. This study explores facilitators and barriers to physical activity in nursing homes through the experiences of healthcare professionals and family caregivers. The goal is to enhance our understanding of how to promote and support physical activity for nursing home residents by identifying essential factors for successfully implementing daily physical activity initiatives. METHODS: Seven focus groups were conducted with a total of 31 participants. Participants included healthcare professionals (physiotherapists, nurses, unit- and department managers, assistant occupational therapists, and assistant nurses) and family caregivers of residents at nursing homes. Data were analysed using Braun and Clarke's reflexive thematic analysis, underpinned by hermeneutic phenomenology. RESULTS: Three main themes related to facilitators and barriers to physical activity in nursing homes were identified: inconsistency in task prioritisation; need for improved interprofessional collaboration; and need for improved utilisation of external resources. The participants experienced task prioritisation and lack of interdisciplinary collaboration as barriers to physical activity. The involvement of external societal resources was considered as both a facilitator and a necessity for obtaining physical activity in nursing homes. CONCLUSIONS: This study highlights the need for a consensus in task prioritisation, enhanced competence among healthcare professionals, and better interdisciplinary collaboration to facilitate physical activity in nursing homes. Involving external societal resources could be a strategic approach to address barriers and support physical activity initiatives. Future research should focus on developing effective strategies for interdisciplinary collaboration that prioritises and promotes physical activity in nursing homes.

Perspectives of telemedicine-based services among family caregivers of patients with end-of-life cancer: a qualitative study in mainland China.

BACKGROUND: Despite being driven by a strong sense of duty and familial obligation, providing care for patients nearing the end of life poses challenges for family caregivers. Telemedicine has rapidly gained traction as a transformative approach to healthcare delivery, offering an array of benefits that could be particularly valuable in end-of-life care. However, research on the perspectives of telemedicine-based services among family caregivers of patients with end-of-life cancer is limited. Therefore, this study aims to explore the perspectives and preferences of telemedicine-based services among family caregivers of patients with end-of-life cancer and provide a framework for developing and executing a tailored telemedicine-based end-of-life care program that addresses the unique needs of family caregivers in mainland China. METHOD: A descriptive phenomenological approach was used. Family caregivers were selected using purposive sampling at a tertiary cancer hospital. One-on-one semi-structured interviews were conducted with the participants from November to December 2022. Colaizz's method was used to analyze the interviews. RESULTS: Fourteen participants participated in interviews. Three themes and ten subthemes were identified: motivation to receive telemedicine services (relief from the burden of home care; access to professional health care services), supportive care needs for telemedicine services (support for symptom management; negative emotional adjustment; death education; daily life care guidance), and functional expectations of telemedicine service platforms (ease of use; real-time online guidance and response; personalized automatic reminder; targeted matching push of health knowledge). CONCLUSION: Family caregivers expressed interest in telemedicine-based services and identified various care needs before receiving telemedicine services. The findings of this study can help policymakers and healthcare providers develop more effective and culturally appropriate telemedicine-based service programs that can better support family caregivers of end-of-life cancer patients.

Family caregivers' administration of medications at the end-of-life in China: a qualitative study.

BACKGROUND: Effective medication management is crucial for ensuring timely pain and symptom control at the end of life. Dying in pain is a major concern for patients, yet some find less effective pain control at home. Family caregivers (FCGs) play a vital role in managing pain and symptom control for dying patients. However, the experience of administering medications at home for terminal-stage patients has not been widely recognized or understood. Our study aimed to explore the experiences of FCGs in administering medications to adult dying patients. METHODS: We conducted a directed content analysis of data from 73 semi-structured interviews with FCGs across 19 Chinese provinces from 2021 to 2023. FCGs were recruited through the Voluntary Cooperative Network Research. We asked, "Could you recall the end-of-life care process for the patients?" We aligned the themes with the five issues identified by Wilson et al. (2018): administration, organizational skills, empowerment, relationships, and support. RESULTS: FCGs in China exhibit concerns about over-engagement and empowerment in medication administration, concealing medication information from the patient, and medication accessibility. FCGs faced significant challenges in accurately identifying and addressing pain and symptoms, determining appropriate dosages, accessing effective medications, and managing the emotional stress associated with potential medication errors. Financial burden, medication regulatory restrictions, geographical inequality, and travel restrictions during COVID impeded patients and FCGs from accessing medication. A culturally specific finding is the use of alternative medicine at the end of life. CONCLUSION: Our findings build upon Wilson et al.'s framework and extend their insights on empowerment, highlighting the need for policies to support home-based palliative care professionals in training FCGs for effective medication administration.

Family caregivers' preferences for support when caring for a family member with cancer in late palliative phase who wish to die at home - a grounded theory study.

BACKGROUND: Family caregivers are essential in end-of-life care for cancer patients who wish to die at home. The knowledge is still limited regarding family caregivers needs and preferences for support and whether the preferences change during the patient's illness trajectory. Therefore, the aim was to explore family caregivers' preferences for support from home care services over time when caring for a family member with cancer at the end of life who wished to die at home. METHODS: A qualitative method was applied according to Grounded Theory. Data was collected longitudinally over the illness trajectory by means of repeated individual interviews (n = 22) with adult family caregivers (n = 11). Sampling, data collection and data analysis were undertaken simultaneously in line with the constant comparative method. RESULTS: The findings are captured in the core category "hold out in duty and love". The categories "having control and readiness for action" and "being involved in care" describe the family caregivers' preferences for being prepared and able to handle procedures, medical treatment and care, and to be involved by the healthcare personnel in the patient's care and decision making. The categories "being seen and confirmed" and "having a respite" describe family caregivers' preferences for support according to their own needs to be able to persevere in the situation. CONCLUSION: Despite deterioration in the patient's illness and the increasing responsibility family caregiver struggle to hold out and focus on being in the present. Over time together with deterioration in the patient's illness and changes in the situation, they expressed a need for more intense and extensive support from the home care services. To meet the family caregivers' preferences for support a systematic implementation of a person-centred care model and multicomponent psycho- educational interventions performed by nurses can be proposed. Moreover, we suggest developing a tool based on the conceptual model generated in this study to identify and map family caregivers' needs and preferences for support. Such a tool can facilitate communication and ensure person-centred interventions.

The CAREPAL-8: a short screening tool for multidimensional family caregiver burden in palliative care.

BACKGROUND: Family caregivers of terminally ill and dying people do not only experience varying levels but also different dimensions of caregiver-related strain and burden. The aim of the study was to develop a short multidimensional screening tool for the detection of burden in family caregivers in palliative care. METHODS: Family caregivers of cancer patients newly admitted to specialist inpatient palliative care (N = 232) completed questionnaires on psychological burden, quality of life, social support and need fulfillment. A latent class mixture model was used to identify discrete classes of family caregivers related to their multidimensional caregiver burden. Multinomial logistic regression analyses were performed to identify the most predictive items from a set of established questionnaires. RESULTS: Four latent classes of family caregivers were identified: Currently stable caregivers (37%), Caregivers with unmet needs (20%), Psychologically burdened caregivers (30%), and High-risk caregivers (13%). Each of these classes describes a different risk profile of multidimensional family caregiver burden, although family caregivers exhibit high levels of distress across all classes. From a set of 48 items, we identified eight items that predicted the class membership best. These items represent the items of the novel multidimensional screening tool: The 8-item Screening Tool for Family Caregiver Burden in Palliative Care (CAREPAL-8). Except for social support, the items maintained fidelity to the conceptualization of multidimensional caregiver burden used in this study. A preliminary classification system was developed, which has yet to be validated. CONCLUSIONS: This study represents the first step in the establishment of a practical, self-administered screening tool that might help healthcare providers to tailor caregiver care according to their burden in daily practice. Brevity of the 8-item tool might facilitate its use in routine clinical care.

Long-term burden of informal caregiver 7-years after severe childhood traumatic brain injury in the traumatisme grave de l'Enfant (TGE) study.

OBJECTIVE: To investigate reported burden by the Primary Family Caregiver (PFC) 7-years after severe pediatric traumatic brain injury in the TGE (Traumatisme Grave de l'Enfant) longitudinal study. METHODS: Subjective burden was estimated with the Zarit Burden Inventory (ZBI) in 36 PFC (parents), who rated their own health status (Medical Outcome Study Short Form-12), family functioning and their child's level of care and needs (Pediatric/Adult Care And Needs Scale [PCANS/CANS]). Data collection included: child and PFC sociodemographic characteristics, injury-related factors, 'objective' (e.g. overall level of disability: Glasgow Outcome Scale - Extended, GOS-E/GOS-E-Peds) and 'subjective' outcomes (e.g. participation, behavior, executive functions, quality of life and fatigue). RESULTS: 25% of PFC reported mild-moderate burden, and 19% moderate-severe burden. Higher burden correlated with worse outcomes in all 'subjective' PFC-rated outcomes, and with self-reported participation. The ZBI correlated strongly with CANS/PCANS and GOS-E/GOS-E-Peds. Overall level of disability and PFC-reported executive functioning explained 62% of the ZBI variance. For equal levels of disability, burden was higher when PFC reported a 'negative' picture of their child. CONCLUSION: Significant PFC-reported burden 7-years post-injury was associated with overall disability and 'subjective' PFC-rated outcomes. Factors influencing parental burden in the long term should be identified and psychological support implemented over time.

Design of Digital Mental Health Platforms for Family Member Cocompletion: Scoping Review.

BACKGROUND: The COVID-19 pandemic placed an additional mental health burden on individuals and families, resulting in widespread service access problems. Digital mental health interventions suggest promise for improved accessibility. Recent reviews have shown emerging evidence for individual use and early evidence for multiusers. However, attrition rates remain high for digital mental health interventions, and additional complexities exist when engaging multiple family members together. OBJECTIVE: As such, this scoping review aims to detail the reported evidence for digital mental health interventions designed for family use with a focus on the build and design characteristics that promote accessibility and engagement and enable cocompletion by families. METHODS: A systematic literature search of MEDLINE, Embase, PsycINFO, Web of Science, and CINAHL databases was conducted for articles published in the English language from January 2002 to March 2024. Eligible records included empirical studies of digital platforms containing some elements designed for cocompletion by related people as well as some components intended to be completed without therapist engagement. Platforms were included in cases in which clinical evidence had been documented. RESULTS: Of the 9527 papers reviewed, 85 (0.89%) met the eligibility criteria. A total of 24 unique platforms designed for co-use by related parties were identified. Relationships between participants included couples, parent-child dyads, family caregiver-care recipient dyads, and families. Common platform features included the delivery of content via structured interventions with no to minimal tailoring or personalization offered. Some interventions provided live contact with therapists. User engagement indicators and findings varied and included user experience, satisfaction, completion rates, and feasibility. Our findings are more remarkable for what was absent in the literature than what was present. Contrary to expectations, few studies reported any design and build characteristics that enabled coparticipation. No studies reported on platform features for enabling cocompletion or considerations for ensuring individual privacy and safety. None examined platform build or design characteristics as moderators of intervention effect, and none offered a formative evaluation of the platform itself. CONCLUSIONS: In this early era of digital mental health platform design, this novel review demonstrates a striking absence of information about design elements associated with the successful engagement of multiple related users in any aspect of a therapeutic process. There remains a large gap in the literature detailing and evaluating platform design, highlighting a significant opportunity for future cross-disciplinary research. This review details the incentive for undertaking such research; suggests design considerations when building digital mental health platforms for use by families; and offers recommendations for future development, including platform co-design and formative evaluation.

Burden and quality of life of family caregivers of Alzheimer's disease patients: the role of forgiveness as a coping strategy.

OBJECTIVES: This study aimed to evaluate the variables that  were associated, contributed and moderated quality of life (QoL) and burden in family caregivers. METHODS: A total of 130 participants were evaluated using the following instruments: Depression, Anxiety and Distress Scale; Index of Family Relations; Heartland Forgiveness Scale; Burden Interview Scale; Short Form Health Survey. RESULTS: Being a younger caregiver, less distress, better family relationships and greater use of forgiveness were associated with more QoL. Also, family caregivers who chosethe caregiving role, less distress, better family relationships and greater use of forgiveness showed lower levels of burden. Age, distress and forgiveness contributed to QoL. In turn, the choice to become a family caregiver, distress, and forgiveness contributed to burden. Forgiveness played a moderating role in the relationship between family relationships and burden. CONCLUSION: Based on the results, there is a need to intervene in older family caregivers, particularly those who did not choose to become a caregiver, who report greater distress, have worse family relationships, and display less use of forgiveness, in order to decrease their burden and promote QoL.

The enrichment process for family caregivers of persons living with dementia: A grounded theory approach.

AIM: Many persons living with dementia (PLWD) reside in the community and are cared for by family members. The aim of this qualitative study was to gain an understanding the enrichment process for family caregivers of PLWD in Taiwan. DESIGN: A grounded theory approach with face-to-face semi-structured interviews was conducted with family caregivers of PLWD in Taiwan. METHODS: Interview data from 30 family caregivers of PLWD recruited from dementia clinics or support groups in Taiwan were obtained from the first wave of a larger study conducted from January 2018 to September 2021. Glaser's grounded theory approach with theoretical sampling was used to understand the enrichment process of family caregivers of PLWD. RESULTS: Analysis indicated the core category that characterized the process of enrichment was 'holding together'. Caregivers were able to maintain their connection to the person with dementia through activities that deepened their relationship and strengthened their bond. 'Holding together' included four components: maintaining continuity, creative interactions, interacting with humour and sharing pleasurable activities. Through these components, family caregivers generated positive interactions and relationships with the person living with dementia and sustained their motivation for caregiving. Three modifying elements facilitated or impeded the process of holding together: 'previous daily interactions', 'caregiving beliefs' and 'filial piety'. CONCLUSION: Through the enrichment process of 'holding together', family caregivers used different strategies to conduct pleasurable and meaningful activities with the person living with dementia to maintain and improve their relationship and enhance their happiness in life. IMPACT: To facilitate the enrichment process, health care providers should encourage activities between family caregivers and PLWD that promote continuity, increase interactions, provide humour and foster pleasurable activities. REPORTING METHOD: This study adhered to the COREQ guideline checklist. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Family caregiver readiness to adopt smart home technology to monitor care-Dependent older adults: A qualitative exploratory study.

AIMS: The aim of this study was to explore factors that influence family caregiver readiness to adopt health smart home technology for their care-dependent older adult family member. Health smart homes are designed to remotely monitor the health and wellness of community-dwelling older adults supporting independent living for as long as possible. Accordingly, if the health smart home is deployed into the home of a care-depended older adult, it can potentially support family caregivers by facilitating workforce participation and give piece of mind to the family caregiver who may not live close to the older adult. However, wider adoption of health smart home technologies into the homes of community-older adults is low, and little is known about the factors that influence the readiness of family caregivers to adopt smart home technologies for their care-dependent older adults. DESIGN: A qualitative Descriptive study design was utilized. METHODS: Qualitative data were collected between 2019 and 2020 via semi-structured interviews. Thematic analysis of interviews was completed, and data were organized into themes. RESULTS: Study findings show that caregiver readiness (N = 10) to adopt smart home technology to monitor older adult family members were influenced by five primary themes including a 'big brother effect', 'framing for acceptance', 'data privacy', 'burden' and 'cost.' CONCLUSION: Family caregivers were open to adopting smart home technology to support the independent living of their older adult family members. However, the readiness of family caregivers was inextricably linked to the older adults' readiness for smart home adoption. The family caregiver's primary concern was on how they could frame the idea of the smart home to overcome what they viewed as hesitancy to adopt in the older adult. The findings suggest that family caregivers endeavour to balance the hesitancy in their older adult family members with the potential benefits of smart home technology. IMPACT: Family caregivers could benefit if their care-dependent older adults adopt smart home technology. Recognizing the role of caregivers and their perspectives on using smart home technologies with their care-dependents is critical to the meaningful design, use and adoption.

Impact of visitation restrictions on the mental health of family caregivers during the COVID-19 pandemic: A mixed methods study.

AIM: To examine the mental health conditions of family caregivers residing away from their loved ones who experienced visitation restrictions during the coronavirus disease 2019 pandemic. DESIGN: A mixed-methods design applying the Kessler Scale-10 for the quantitative measurement of psychological distress and an open-ended question for qualitative analysis. METHODS: The participants were recruited from care facilities between February and September 2021. This cross-sectional study included 197 family caregivers who were utilizing formal residential care services for their loved ones. Using thematic analyses, open-ended responses regarding the impact of visitation restrictions were coded. These themes were then examined to determine thematic patterns across caregiver characteristics. RESULTS: Thirteen themes were identified regarding the impact of visitation restrictions. Many participants reported primary harmful effects as follows: 'inability to confirm the type of care and lifestyle assistance provided to an older relative' and 'difficulty communicating with an older relative because of the inability to converse face-to-face'. Younger age, being employed, poor sleep, poor relationship quality with the care recipient and experiencing harmful effects from the visitation restrictions were associated with psychological distress. CONCLUSION: Our findings suggest that to maintain positive mental health after a care transition, it is important for family caregivers to take part in the care of their loved ones and ensure information sharing between the care recipient's family and institution. IMPACT: These findings suggest that both residents and family caregivers living outside facilities may feel distressed due to separation. Therefore, institutional care staff needs to consider how to adjust facility procedures or communication with family caregivers. PATIENT OR PUBLIC CONTRIBUTION: The comments obtained from the participants in this survey helped to shape the study design and are expected to contribute to the further development of quality facility care.