Partnering with families to promote nutrition in cancer care: feasibility and acceptability of the PIcNIC intervention.
Ontology highlight
ABSTRACT: Malnutrition is frequent in patients with cancer, particularly those in advanced stages of the disease. The aim of the present study was to test the feasibility of a family-centred nutritional intervention, based on the Family Systems theory and past research.This was a single-arm trial assessing feasibility (eligibility, recruitment and retention rates); acceptability by patients, family caregivers and health professionals; intervention fidelity, and energy/protein intake (in one site only). Two sites were involved; one each in Australia (AUS) and Hong Kong (HK), with one site delivering the intervention to oncology patients receiving curative treatments in the hospital, and the other to advanced cancer patients in the home.The sample included 53 patients (23 from AUS and 30 from HK), 22 caregivers (3 from AUS and 19 from HK) and 30 health professionals (20 from AUS and 10 from HK). Recruitment was difficult in the acute inpatient oncology care setting (AUS) and feasibility criteria were not met. Sufficient recruitment took place in the home care setting with advanced cancer patients in HK. Patients, family members and health professionals found the intervention helpful and acceptable, and patients and families indicated they would take part in the future in a similar study. Energy and protein intake improved from baseline to end of intervention (mean 22 kcal/kg/day to 26 and 0.9 g/kg/day to 1.0 respectively).The new intervention is feasible in a home setting when delivered to patients with advanced cancer, acceptable to patients and families, and has the potential to improve nutritional status in patients. A large randomised trial is warranted in the future.
<h4>Background</h4>Malnutrition is frequent in patients with cancer, particularly those in advanced stages of the disease. The aim of the present study was to test the feasibility of a family-centred nutritional intervention, based on the Family Systems theory and past research.<h4>Methods</h4>This was a single-arm trial assessing feasibility (eligibility, recruitment and retention rates); acceptability by patients, family caregivers and health professionals; intervention fidelity, and energy/pr ...[more]
Project description:PurposeAlthough parents with cancer report that talking with their children about cancer and dying is distressing, accessible support is rare. We assessed the feasibility, acceptability, and preliminary effects of Families Addressing Cancer Together (FACT), a web-based, tailored psychosocial intervention to help parents talk about their cancer with their children.MethodsThis pilot study used a pre-posttest design. Eligible participants were parents with new or metastatic solid tumors who had minor (ages 3-18) children. Participants who completed baseline assessments received online access to FACT. We assessed feasibility through enrollment and retention rates and reasons for study refusal. Acceptability was evaluated by satisfaction ratings. We examined participants' selection of intervention content and preliminary effects on communication self-efficacy and other psychosocial outcomes (depression and anxiety symptoms, health-related quality of life, family functioning) at 2- and 12-week post-intervention.ResultsOf 68 parents we approached, 53 (78%) agreed to participate. Forty-six parents completed baseline assessments and received the FACT intervention. Of the 46 participants, 35 (76%) completed 2-week assessments, and 25 (54%) completed 12-week assessments. Parents reported that FACT was helpful (90%), relevant (95%), and easy to understand (100%). Parents' psychosocial outcomes did not significantly improve post-intervention, but parents endorsed less worry about talking with their child (46% vs. 37%) and reductions in the number of communication concerns (3.4 to 1.8).ConclusionThe FACT intervention was feasible, acceptable, and has potential to address communication concerns of parents with cancer. A randomized trial is needed to test its efficacy in improving psychological and parenting outcomes.Trial registrationThis study was IRB-approved and registered with clinicaltrials.gov (NCT04342871).
Project description:Families of pediatric solid organ transplant recipients need ongoing education and support in the first 30 days following hospital discharge for the transplantation. The purpose of this report is to describe the feasibility, acceptability, and preliminary efficacy of a mHealth family-self management intervention, (myFAMI), designed to improve post-discharge outcomes of coping, family quality of life, self-efficacy, family self-management, and utilization of health care resources. We enrolled 46 primary family members. myFAMI was feasible and acceptable; 81% (n=17/21) of family members completed the app at least 24/30 days (goal 80% completion rate). Family members generated 134 trigger alerts and received a nurse response within the goal timeframe of < 2 h 99% of the time. Although there were no significant differences between groups, primary outcomes were in the expected direction. The intervention was well received and is feasible for future post-discharge interventions for families of children who receive an organ transplant.
Project description:BackgroundAdvanced lung cancer patients face significant physical and psychological burden leading to reduced physical function and quality of life. Separately, physical activity, nutrition, and palliative symptom management interventions have been shown to improve functioning in this population, however no study has combined all three in a multimodal intervention. Therefore, we assessed the feasibility of a multimodal physical activity, nutrition, and palliative symptom management intervention in advanced lung cancer.MethodsParticipants received an individually tailored 12-week intervention featuring in-person group-based exercise classes, at-home physical activity prescription, behaviour change education, and nutrition and palliative care consultations. Patients reported symptom burden, energy, and fatigue before and after each class. At baseline and post-intervention, symptom burden, quality of life, fatigue, physical activity, dietary intake, and physical function were assessed. Post-intervention interviews examined participant perspectives.ResultsThe multimodal program was feasible, with 44% (10/23) recruitment, 75% (75/100) class attendance, 89% (8/9) nutrition and palliative consult attendance, and 85% (17/20) assessment completion. Of ten participants, 70% (7/10) completed the post-intervention follow-up. Participants perceived the intervention as feasible and valuable. Physical activity, symptom burden, and quality of life were maintained, while tiredness decreased significantly. Exercise classes prompted acute clinically meaningful reductions in fatigue, tiredness, depression, pain, and increases in energy and well-being.ConclusionA multimodal physical activity, nutrition, and palliative symptom management intervention is feasible and shows potential benefits on quality of life that warrant further investigation in a larger cohort trial.Trial registrationNCT04575831 , Registered 05 October 2020 - Retrospectively registered.
Project description:The purpose of this study was to refine and expand a culturally tailored individual-level diabetes self-management intervention to a family-level intervention.Using community-based participatory research principles, Mexican American adults (n = 12) with type 2 diabetes mellitus (T2DM) and family members (n = 12) in the United States-Mexico border region participated in 6 focus group interviews, conducted by bilingual, bicultural facilitators. Facilitators and barriers to T2DM management were identified. Transcripts were analyzed using qualitative content analysis.Through an iterative analysis process, 5 categories represented participants with T2DM: (1) strategies my family can use to support our managing T2DM, (2) be sensitive to my challenges, (3) stop telling me what to eat or do, (4) how can we peacefully coexist, and (5) I feel supported. Categories identified by family members were (1) changing behaviors together, (2) sharing not controlling, (3) supporting positive behaviors, and (4) your behaviors frustrate me.The family was reinforced as a major influence for successful T2DM management. Family support requires that families value and develop knowledge and skills for T2DM management. This family intervention builds on family assets and relationships, shifting from traditional externally motivated individual models to create a shared commitment to manage T2DM among Mexican American adults.
Project description:Empowering patients to participate in nutrition care during hospitalisation may improve their dietary intakes and associated outcomes. This study tested the acceptability and feasibility of a technology-based intervention to engage hospital patients in nutrition care at a tertiary teaching hospital in Australia. The hospital used an electronic foodservice system (EFS), by which patients ordered meals via bedside computers. Adults at nutritional risk received the nutrition technology (NUTRI-TEC) intervention, involving nutrition assessment, education on nutrition requirements and training on using the EFS to enter food intakes and monitor nutrition goals. Acceptability was assessed using patient satisfaction and engagement surveys. Feasibility was assessed by evaluating the intervention delivery/fidelity and patient recruitment/retention. Patients' dietary intakes were observed daily to indicate the intervention's effects and assess the accuracy of the patient-recorded intakes. Descriptive and inferential statistics were used to analyse the data. Of the 71 patients recruited, 49 completed the study (55% male; median (IQR) age 71 (65-78) years; length of stay 10 (7-14) days). Patient satisfaction with NUTRI-TEC was high. Intervention delivery and fidelity targets were met but recruitment (≥50%) and retention (≥75%) targets were not; only 31% of patients agreed to participate and 69% completed the study (mostly due to unexpected/early discharge). Patient- and researcher-recorded dietary intakes correlated strongly, indicating patients can record food intakes accurately using technology. This study highlights the important role technology is likely to play in facilitating patient engagement and improving care during hospitalisation.
Project description:BackgroundAlthough advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient's values, preferences and goals of care, there are only a few models in paediatric oncology that capture ACP as a process of behaviour change. We aimed to develop and test the acceptability and feasibility of BOOST pACP (Benefits of Obtaining Ownership Systematically Together in paediatric Advance Care Planning) - an intervention to improve ACP in adolescents with cancer, their parents and paediatric oncologists.MethodsSeveral methods informed the intervention development process: 1) Problem identification: interviews with 11 healthcare professionals working in paediatric oncology; 2) Identification of evidence: literature review of existing pACP tools and barriers and facilitators in performing pACP; 3) Logic model and 4) Intervention design: collaborative expert meetings with researchers and professionals in pACP; 5a) Acceptability test of the materials: interviews with nine healthcare professionals, four adolescents and young adults with cancer and six parents; 5b) Feasibility test of core intervention components with three families, including interviews about their experiences.ResultsThe BOOST pACP intervention was iteratively developed and adapted, based on feedback from families, healthcare professionals, and pACP experts (e.g., components were changed, deleted, and added; formulation of themes and associated questions were amended to enhance acceptability). The core components of the BOOST pACP intervention include: four ACP conversation sessions with the adolescent and/or parent(s) provided by a trained facilitator, structured by interactive conversation cards covering different ACP themes, followed by a transfer of information from the intervention facilitator to the paediatric oncologist. Core intervention components were deemed feasible by all participating families.ConclusionThe BOOST pACP intervention was developed by close involvement of both adolescent patients and their parents, healthcare professionals and pACP experts. The final intervention and supporting materials are considered appropriate and feasible. Its effectiveness in improving parent-adolescent communication on ACP themes is currently being tested in a multi-centre randomised controlled trial. Researchers aiming to develop a complex psychosocial intervention for a vulnerable target group could use the step-by-step approach described in this paper.
Project description:Hispanic cancer survivors face unique barriers to meeting American Cancer Society (ACS) nutrition and physical activity guidelines, which reduce the risk of cancer recurrence and mortality and improve quality of life. This pilot intervention trial evaluated the feasibility and acceptability of a two-week ACS guideline-based nutrition and physical activity text message intervention in a predominantly Hispanic sample of cancer survivors and their informal caregivers. A mixed methods approach was used to assess feasibility and acceptability of the intervention. Feasibility and acceptability were measured by meeting a-priori cut-offs of >80% for recruitment, retention, and text message response rate. Participants also completed a semi-structured exit interview by telephone that assessed intervention components. Thirteen cancer survivors and six caregivers (n = 19) participated in this pilot study; 78% self-identified as Hispanic. Mean time since treatment completion for survivors was 11.9 years (SD 8.4), and 67% had breast cancer. Cancer survivors had a higher acceptability rate for physical activity (94%) compared to nutrition messages (86%), whereas equal acceptability rates were observed for both types of messages among caregivers (91%). Texting interventions are a feasible, acceptable, and a cost-effective strategy that have the potential to promote lifestyle behavior change among Hispanic cancer survivors and caregivers.
Project description:ObjectivesTo examine care home resident and staff perceptions of the acceptability of participating in a feasibility trial evaluating nutritional interventions in the treatment of malnutrition.DesignExploratory qualitative methodology was used to gather descriptions of resident and staff perceptions of trial procedures, using semi-structured interviews with residents and focus groups with staff. The interviews were used to explore individual perceptions of the acceptability of the assigned intervention and the outcomes measured. Focus groups were used to explore staff experiences of trial participation and perspectives of nutritional support interventions.SettingThe study was embedded within a cluster randomised feasibility trial, which randomised six care homes to provide standard care (SC), food-based (FB) intervention or oral nutritional supplement (ONS) intervention to residents with, or at risk of, malnutrition.ParticipantsResidents in the trial with capacity to consent (n=7) formed the sampling frame for inclusion. Four agreed to be approached by the researcher and to take part in the individual interviews. All were women, representing two arms of the trial (ONS and SC). Twelve staff participated in six focus groups, one at each care home. All participants were women, representing all three arms of the trial.ResultsMajor themes that emerged from both interviews and focus groups included the perceived acceptability of trial involvement, the value of residents completing participant-reported outcome measures and the challenges associated with outcomes measurement in this setting. Themes that emerged from the focus groups alone, included the importance of individualising an intervention, and the perceived value of FB and ONS interventions and dietetic input.ConclusionsResidents and staff perceived involvement in a trial evaluating nutritional interventions to be acceptable, although the challenges associated with research in this setting were acknowledged. Resident preferences were highlighted by staff as an important consideration when implementing a nutrition support plan.Trial registration numberISRCTN38047922.
Project description:BackgroundUntreated heterozygous familial hypercholesterolaemia (FH) causes high low-density lipoprotein cholesterol (LDL-C) levels and increased cardiovascular disease (CVD) risk. Despite pharmacological treatment, many treated individuals remain at higher CVD risk than non-affected individuals. This may be due to LDL-C targets not being met and presence of other CVD risk factors. Adhering to dietary and physical activity (PA) recommendations developed for individuals with FH may further reduce CVD risk. However, there is insufficient research to support the efficacy of adhering to these guidelines on LDL-C and other CVD risk factors. The need for studies to investigate the effectiveness of nutrition and PA interventions in the FH population has been widely recognised and recommended. This paper describes the protocol of a pilot, randomised controlled trial designed to evaluate the feasibility and acceptability of a specifically developed nutrition and PA intervention aimed at improving the dietary intakes and PA levels of families with FH.MethodsA two-arm randomised waitlist-controlled pilot trial will be conducted across three National Health Service (NHS) sites in England, UK. Twenty-four young people with FH, aged 10-18 years, and their affected parent, will be recruited and randomly assigned to the intervention or waitlist and usual care control. The primary aim is to provide evidence for the feasibility and acceptability of delivering the intervention, explored quantitatively (rates of recruitment, retention and outcome measure completeness) and qualitatively (qualitative interviews). The secondary aim is to provide evidence for the potential efficacy of the intervention on dietary intake, PA, sedentary time, body composition, CVD risk factors and quality of life determined at baseline and endpoint assessments. The intervention will involve an hour-long consultation with a dietitian at baseline and four follow-up contacts across the 12-week intervention. It has been specifically developed for use with individuals with FH and incorporates behavioural change techniques to target identified enablers and barriers to adherence in this population.DiscussionThis trial will estimate the feasibility and acceptability of the nutrition and PA intervention delivered to young people and parents with FH. If appropriate, this study can be used to inform the design of an adequately powered definitive trial.Trial registrationISRCTN, ISRCTN24880714. Registered 07/06/2018, http://www.isrctn.com/ISRCTN24880714.
Project description:Infant-parent interaction forms the foundation for language learning. For the majority of deaf infants, hearing loss can impact access to, and the quality of communicative interactions, placing language development at risk. Support for families to meet the challenges faced during interaction is highly variable in the United Kingdom. In a step towards more standardized but tailorable family support, we co-produced an instructional, video-based intervention, testing for feasibility in terms of behavior change in seven communicative strategies and acceptability with 9 parents, forming study 1. Parents increased their use of the majority of behaviors and found content and delivery acceptable. However, further development was required to: (a) support use of semantically contingent talk and attention getting strategies to elicit infant attention, and (b) ensure the information was provided in a bite-size format that could be tailored to individual families. In study 2, the intervention was refined based on findings from study 1 and assessed for acceptability with 9 parents and 17 professionals, who reported similar high acceptability scores. Final refinements and modifications could be addressed in future interventions. The current studies provide a positive early step towards a standardized intervention to support communication that could be used in routine practice.
