Dataset Information

Feasibility and Acceptability of Digital Legacy-Making: An Innovative Story-Telling Intervention for Adults With Cancer.

ABSTRACT:

Background

This study examined the feasibility, burden and acceptability of a legacy-making intervention in adults with cancer and preliminary effects on patient quality-of-life (QOL) measures.

Method

We conducted a Stage IB pilot, intervention study. The intervention was a digital video legacy-making interview of adults with advanced cancer to create a digital video of their memories and experiences. Baseline and post-video QOL assessments included: Functional Assessment of Cancer Therapy-General (FACT-G), Patient Dignity Inventory (PDI), Hospital Anxiety and Depression Scale (HADS), and Emotional Thermometers for distress, anxiety, anger, help and depression. Participants received a final copy of the digital video for distribution to their families.

Results

Adults (n = 16) ages 38-83 years old with an advanced or life-limiting cancer diagnosis completed an intervention. Feasibility and acceptability was strong with 0% attrition. While the pilot study was not powered for quantitative significance, there were changes from baseline to post-intervention in the participants' total or subscale FACT-G scores, PDI, HADS anxiety or depression scores, and Emotional Thermometer scores.

Conclusions

A digital video legacy-making intervention is feasible for adults with cancer without significant negative outcomes for individuals completing the study. It remains unclear whether this intervention contributes to positive quality of life outcomes.

SUBMITTER: DeSanto-Madeya S

PROVIDER: S-EPMC8107182 | biostudies-literature | 2021 Jul

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Feasibility and Acceptability of Digital Legacy-Making: An Innovative Story-Telling Intervention for Adults With Cancer.

DeSanto-Madeya Susan S Tjia Jennifer J Fitch Christina C Wachholtz Amy A

The American journal of hospice & palliative care 20201110 7

<h4>Background</h4>This study examined the feasibility, burden and acceptability of a legacy-making intervention in adults with cancer and preliminary effects on patient quality-of-life (QOL) measures.<h4>Method</h4>We conducted a Stage IB pilot, intervention study. The intervention was a digital video legacy-making interview of adults with advanced cancer to create a digital video of their memories and experiences. Baseline and post-video QOL assessments included: Functional Assessment of Cance ...[more]

PMID: 33167669

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Project description:BackgroundInterventions to involve parents in decisions regarding children's and young people's mental health are associated with positive outcomes. However, appropriately planning effectiveness studies is critical to ensure that meaningful evidence is collected. It is important to conduct pilot studies to evaluate the feasibility and acceptability of the intervention itself and the feasibility of the protocol to test effectiveness.ObjectiveThis paper reports the findings from a feasibility and acceptability study of Power Up for Parents, an intervention to promote shared decision-making (SDM) and support parents and caregivers making decisions regarding children's and young people's mental health.MethodsA mixed method study design was adopted. In stage 1, health care professionals and parents provided feedback on acceptability, usefulness, and suggestions for further development. Stage 2 was a multicenter, 3-arm, individual, and cluster randomized controlled pilot feasibility trial with parents accessing services related to children's and young people's mental health. Outcome measures collected data on demographics, participation rates, SDM, satisfaction, and parents' anxiety. Qualitative data were analyzed using thematic analysis. Google Analytics estimates were used to report engagement with the prototype. Outcomes from both stages were tested against a published set of criteria for proceeding to a randomized controlled trial.ResultsDespite evidence suggesting the acceptability of Power Up for Parents, the findings suggest that recruitment modifications are needed to enhance the feasibility of collecting follow-up data before scaling up to a fully powered randomized controlled trial. On the basis of the Go or No-Go criteria, only 50% (6/12) of the sites successfully recruited participants, and only 38% (16/42) of parents completed follow-up measures. Nonetheless, health care practitioners and parents generally accessed and used the intervention. Themes describing appearance and functionality, perceived need and general helpfulness, accessibility and appropriateness, and a wish list for improvement emerged, providing valuable information to inform future development and refinement of the intervention.ConclusionsOwing to the high attrition observed in the trial, proceeding directly to a full randomized controlled trial may not be feasible with this recruitment strategy. Nonetheless, with some minor adjustments and upgrades to the intervention, this pilot study provides a platform for future evaluations of Power Up for Parents.Trial registrationInternational Standard Randomized Controlled Trial Number (ISRCTN) 39238984; http://www.isrctn.com/ISRCTN39238984.International registered report identifier (irrid)RR2-10.2196/14571.

Project description:BackgroundCommon mental health disorders (CMDs) are leading causes of disability globally. The ongoing COVID-19 pandemic has further exacerbated the burden of CMDs. COVID-19 containment measures, including lockdowns, have disrupted access to in-person mental health care. It is therefore imperative to explore the utility of digital mental health interventions to bridge the treatment gap. Mobile health technologies are effective tools for increasing access to treatment at a lower cost. This study explores the utility of Inuka, a chat-based app hinged on the Friendship Bench problem-solving therapy intervention. The Inuka app offers double anonymity, and clients can book or cancel a session at their convenience. Inuka services can be accessed either through a mobile app or the web.ObjectiveWe aimed to explore the feasibility of conducting a future clinical trial. Additionally, we evaluated the feasibility, acceptability, appropriateness, scalability, and preliminary effectiveness of Inuka.MethodsData were collected using concurrent mixed methods. We used a pragmatic quasiexperimental design to compare the feasibility, acceptability, and preliminary clinical effectiveness of Inuka (experimental group) and WhatsApp chat-based counseling (control). Participants received 6 problem-solving therapy sessions delivered by lay counselors. A reduction in CMDs was the primary clinical outcome. The secondary outcomes were health-related quality of life (HRQoL), disability and functioning, and social support. Quantitative outcomes were analyzed using descriptive and bivariate statistics. Finally, we used administrative data and semistructured interviews to gather data on acceptability and feasibility; this was analyzed using thematic analysis.ResultsAltogether, 258 participants were screened over 6 months, with 202 assessed for eligibility, and 176 participants were included in the study (recruitment ratio of 29 participants/month). The participants' mean age was 24.4 (SD 5.3) years, and most participants were female and had tertiary education. The mean daily smartphone usage was 8 (SD 3.5) hours. Eighty-three users signed up and completed at least one session. The average completion rate was 3 out of 4 sessions. Inuka was deemed feasible and acceptable in the local context, with connectivity challenges, app instability, expensive mobile data, and power outages cited as potential barriers to scale up. Generally, there was a decline in CMDs (F2,73=2.63; P=.08), depression (F2,73=7.67; P<.001), and anxiety (F2,73=2.95; P=.06) and a corresponding increase in HRQoL (F2,73=7.287; P<.001) in both groups.ConclusionsStudy outcomes showed that it is feasible to run a future large-scale randomized clinical trial (RCT) and lend support to the feasibility and acceptability of Inuka, including evidence of preliminary effectiveness. The app's double anonymity and structured support were the most salient features. There is a great need for iterative app updates before scaling up. Finally, a large-scale hybrid RCT with a longer follow-up to evaluate the clinical implementation and cost-effectiveness of the app is needed.

Project description:BackgroundCancer survival rates in the UK are lower in comparison with similar countries in Europe and this may be linked to socioeconomic inequalities in stage of cancer diagnosis and survival. Targeted cancer awareness interventions have the potential to improve earlier symptomatic diagnosis and reduce socioeconomic inequalities in cancer outcomes. The health check is an innovative, theory-based intervention designed to increase awareness of cancer symptoms and risk factors, and encourage timely help seeking among adults living in deprived communities.MethodsA prospective, non-randomised evaluation was undertaken to test the feasibility and acceptability of the health check for adults aged 40 years and over living in deprived areas of Wales. Primary outcomes included recruitment and retention of approximately 100 adults, reach to participants in the lowest deprivation quartile, and intervention acceptability. Secondary outcomes included self-reported cancer symptom recognition, help-seeking behaviours and state anxiety pre/post intervention.ResultsOf 185 individuals approached, 98 (53%) completed the intervention. Sixty-six of 98 participants were recruited from community settings (67%) and 32 from healthcare settings (33%), with 56 (57%) from the lowest deprivation quartile. Eighty-three (85%) participants completed follow-up assessment. Participants recognised on average one extra cancer symptom post intervention, with improved recognition of and anticipated presentation for non-specific symptoms. State anxiety scores remained stable. Qualitative interviews (n = 25) demonstrated that the intervention was well received and motivated change.ConclusionsRecruitment was feasible in community and healthcare settings, with good reach to adults from low socioeconomic groups. The health check intervention was acceptable and demonstrated potential for improved cancer awareness and symptom presentation, especially for non-specific symptoms, in communities most affected by cancer.

Project description:BackgroundOlder adults with obesity residing in rural areas have reduced access to weight management programs. We determined the feasibility, acceptability and preliminary outcomes of an integrated technology-based health promotion intervention in rural-living, older adults using remote monitoring and synchronous video-based technology.MethodsA 6-month, non-randomized, non-blinded, single-arm study was conducted from October 2018 to May 2020 at a community-based aging center of adults aged ≥65 years with a body mass index (BMI) ≥30 kg/m2. Weekly dietitian visits focusing on behavior therapy and caloric restriction and twice-weekly physical therapist-led group strength, flexibility and balance training classes were delivered using video-conferencing to participants in their homes. Participants used a Fitbit Alta HR for remote monitoring with data feedback provided by the interventionists. An aerobic activity prescription was provided and monitored.ResultsMean age was 72.9±3.9 years (82% female). Baseline anthropometric measures of weight, BMI, and waist circumference were 97.8±16.3 kg, 36.5±5.2 kg/m2, and 115.5±13.0 cm, respectively. A total of 142 participants were screened (n=27 ineligible), and 53 consented. There were nine dropouts (17%). Overall satisfaction with the trial (4.7+ 0.6, scale: 1 (low) to 5 (high)) and with Fitbit (4.2+ 0.9) were high. Fitbit was worn an average of 81.7±19.3% of intervention days. In completers, mean weight loss was 4.6±3.5 kg or 4.7±3.5% (p< 0.001). Physical function measures of 30-s sit-to-stand repetitions increased from 13.5±5.7 to 16.7±5.9 (p< 0.001), 6-min walk improved by 42.0±77.3 m (p=0.005) but no differences were observed in gait speed or grip strength. Subjective measures of late-life function improved (3.4±4.7 points, p< 0.001).ConclusionsA technology-based obesity intervention is feasible and acceptable to older adults with obesity and may lead to weight loss and improved physical function.Clinical trial registrationRegistered on Clinicaltrials.gov # NCT03104205 . Registered on April 7, 2017. First participant enrolled on October 1st, 2018.

Project description:Digital Story Telling (DST) is an art-based research method used to explore embodied experience of health and initiate dialogue with under-represented groups on issues affecting them. It involves engaging participants to create and share their stories using photos, drawings, and audio recordings in short videos. Benefits of DST include enhancing co-creation of knowledge, empowering participants to confront dominant narratives and revise inaccurate representations. We report our experiences and reflections of using DST to explore community perceptions of health concerns in urban Malawi. Community leaders were briefed about the project before and after study related activities. Three participatory workshops were organized to train community members in DST, support them to develop videos and discuss their experiences of DST. Twenty-six participants from two high density urban communities consented to be part of the workshops. They were all new to DST. All the 26 participants were invited together to the three workshops and their DSTs were developed in smaller groups (n = 7), based on their geographical location. Although we engaged residents from selected communities to share priority health concerns, all the seven groups presented challenges pertaining to Water, Sanitation and Hygiene (WASH), and their powerlessness to address the complex challenges. The collective focus on WASH showed that DST effectively empowered communities to present priority health concerns. The inability of community members to address the challenges without external assistance or failure to use findings from DST to generate social change however raise questions on the ideals of empowerment and social justice. In addition, lack of financial resources or technical know-how to produce digital stories and unequal power relationships between service providers and community, may affect the use of DST for community activism among socio-economically disadvantaged groups. We conclude that DST empowered participants to articulate genuine health challenges that they felt powerless to address. We question the realization of "empowerment" and social justice of vulnerable participants in cases where structural challenges present obstacles to effectively address social inequalities.

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Dataset Information

Feasibility and Acceptability of Digital Legacy-Making: An Innovative Story-Telling Intervention for Adults With Cancer.

Background

Method

Results

Conclusions

Publications

Feasibility and Acceptability of Digital Legacy-Making: An Innovative Story-Telling Intervention for Adults With Cancer.

Similar Datasets

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