Examining the feasibility of a parental self-help intervention for families awaiting pediatric eating disorder services.

OBJECTIVE: Waitlists for eating disorder (ED) services grew immensely during the COVID-19 pandemic. To address this, we studied the feasibility of a novel parental self-help waitlist intervention. METHOD: Parents of a child/adolescent (7-17 years) awaiting pediatric ED services were provided with our intervention, adapted from the family-based treatment model, and consisting of videos and reading material with no therapist involvement. Parent-reported child/adolescent weight was collected weekly 6 weeks pre-intervention, 2 weeks during the intervention, and 6-week post-intervention. Recruitment and retention rates were calculated. Regression-based interrupted time series analyses were completed to measure changes in the rate of weight gain. RESULTS: Ninety-seven parents were approached, and 30 agreed to participate (31% recruitment rate). All but one completed end-of-study measures (97% retention rate). The average rate of weight gain was 0.24 lbs/week pre-intervention, which increased significantly to 0.78 lbs/week post-intervention (p < .034). DISCUSSION: Our findings provide preliminary evidence that this intervention is feasible. Future research is needed to confirm the efficacy of this intervention on a larger scale. PUBLIC SIGNIFICANCE: The COVID-19 pandemic has resulted in several challenges in providing care for children and adolescents with eating disorders, including long waiting lists and delays in treatment. This study suggests that providing parents on a waitlist with educational videos and reading material is acceptable to parents, and may even help in improving the child's symptoms of an eating disorder.

Virtual parent-led peer support groups for parents of children with eating disorders: A mixed methods feasibility study.

OBJECTIVE: To examine the feasibility of a virtual parent-led peer support group (vPLPSG) intervention for parents of children with eating disorders (EDs). METHODS: Forty-four parents were invited to attend 2-h-long vPLPSG sessions every other week for 6 months. A convergent mixed methods design was used to integrate quantitative survey data (collected at three timepoints and analyzed using repeated measures ANOVA) and qualitative interview data (collected at 6 months and analyzed using content analysis) to assess intervention feasibility. Feasibility was comprised of acceptability (e.g., recruitment and retention rates, desire to continue attending the groups) and preliminary effectiveness (e.g., change in parents' self-reported burden). RESULTS: The recruitment rate (67%), retention rate (77%), and attendance rate (60%) demonstrated adequate acceptability. All parents expressed their recommendation of this group to other parents, and most wanted to continue attending vPLPSG sessions. Participants qualitatively reported less isolation and burden as well as improvements in skills and confidence to manage their child's symptoms. These preliminary effectiveness findings were corroborated by quantitative data, with participants reporting a significant decrease in burden [mean difference (MD) = 6.61; p < .004], increase in confidence (MD = 11.17; p < .001), and decrease in unmet needs (MD = 5.03; p < .001) from baseline to 6-months. DISCUSSION: The vPLPSG intervention demonstrated feasibility with respect to acceptability and improvements in preliminary parental outcomes. Future research should evaluate the effectiveness of this intervention using a larger, more diverse sample. PUBLIC SIGNIFICANCE: Dedicated efforts to support caregivers, such as through virtual parent-led peer support groups, have the potential to increase confidence and decrease burden for parents managing their child's eating disorder.

Assessing the feasibility of an intervention for adolescents and parents transitioning out of paediatric eating disorder services: A mixed methods study.

OBJECTIVE: To assess the feasibility of a new intervention designed to support adolescents and parents in the transition from paediatric eating disorder (ED) treatment to adult mental health services. METHOD: Pre-transition adolescents with EDs, and their parents, were invited to complete up to five transition intervention components over 3 months. A mixed methods design was used to assess intervention feasibility, comprised of acceptability and preliminary effectiveness. A single-arm pre-post design was used to collect and analyse quantitative survey and feasibility data. Individual qualitative interviews and written reflections were collected and analysed using content analysis. RESULTS: This study yielded a 33% (10/31) recruitment rate and 68% (13/19) retention rate. On average, participants completed 75% of the expected components in under 3 months, with varied completion of each expected intervention component (40%-100%). Participants found the intervention convenient and helpful. Parents reported a significant decrease in guilt (Z = -2.02, p = 0.04, d = -0.83). By 1-month post-transition, three adolescents transitioned to interim supports and none started specialist adult treatment. CONCLUSIONS: Although this transition intervention did not demonstrate adequate feasibility, its acceptability and effectiveness should be evaluated after an update based on participant feedback. Other solutions to bridge the transition gap for adolescents with EDs should continue to be identified. CLINICAL TRIAL REGISTRATION NUMBER: NCT04888273.

TransitionED: A protocol for Co-designing and implementing Canadian practice guidelines for transitions for youth with eating disorders.

OBJECTIVE: Limited guidelines inform the transition from paediatric to adult healthcare for youth and young adults (YYA) with eating disorders (EDs). This study will develop, implement, and evaluate Canadian Clinical Practice Guidelines for ED transition, including identifying the relevant measurement and evaluation tools for transition readiness and continuity of care. METHODS: This study consists of three phases. Phase 1 involves conducting a scoping review of the evidence on transition interventions, outcomes, and measurement tools for YYA with EDs, along with guideline development using the modified Delphi method. Phase 2 identifies the contextual/cultural factors relevant to guideline implementation and co-designing an implementation protocol with governance committees and research partners. Phase 3 involves the application and evaluation of the proposed guide lines using the implementation protocol, and assessing the acceptability and feasibility of a prototype transition intervention in two Canadian paediatric ED programs. CONCLUSIONS: Results will provide the knowledge needed to enhance the lives of YYA, improve the effectiveness of the ED care system, and support the scale of the transition guidelines across Canada. These guidelines will have international relevance by potentially informing the field on how to support young people with EDs transitioning in similar funding structures and systems of care.

A study protocol for implementing Canadian Practice Guidelines for Treating Children and Adolescents with Eating Disorders.

BACKGROUND: Eating disorders have one of the highest mortality rates among psychiatric illnesses. Timely intervention is crucial for effective treatment, as eating disorders tend to be chronic and difficult to manage if left untreated. Clinical practice guidelines play a vital role in improving healthcare delivery, aiming to minimize variations in care and bridge the gap between research and practice. However, research indicates an active guideline implementation approach is crucial to effective uptake. METHODS: Mixed methods will be used to inform and evaluate our guideline implementation approach. Semi-structured focus groups will be conducted in each of the eight provinces in Canada. Each focus group will comprise 8-10 key stakeholders, including clinicians, program administrators, and individuals with lived experience or caregivers. Qualitative data will be analyzed using conventional content analysis and the constant comparison technique and the results will be used to inform our implementation strategy. The study will then evaluate the effectiveness of our implementation approach through pre- and post-surveys, comparing changes in awareness, use, and impact of the guidelines in various stakeholder groups. DISCUSSION: Through a multifaceted implementation strategy, involving the co-creation of educational materials, tailored training, and context-specific strategies, this study intends to enhance guideline uptake and promote adherence to evidence-based practices. Our study will also contribute valuable information on the impact of our implementation strategies.

Palliative Approach to Care Education for Multidisciplinary Staff of Long-Term Care Homes: A Pretest Post-Test Study.

This study used a single-group pre-test and post-test design to evaluate an educational workshop for multidisciplinary staff working in long-term care homes on implementing a palliative approach to care and perceptions about advanced care planning conversations. Two outcomes were measured to assess the preliminary efficacy of the educational workshop at baseline and 1-month post-intervention. Knowledge regarding implementing a palliative approach to care was assessed using the End-of-Life Professional Caregivers Survey and changes in staff perception toward ACP conversations were assessed using the Staff Perceptions Survey. Findings suggest that staff experienced an improvement in self-reported knowledge regarding a palliative approach to care (p ≤ .001); and perceptions of knowledge, attitude, and comfort related to advance care planning discussions (p ≤ .027). The results indicate that educational workshops can assist in improving multidisciplinary staff's knowledge about a palliative approach to care and comfort in carrying out advance care planning discussions with residents, family care partners, and among long-term care staff.

Multidisciplinary implementation of family-based treatment delivered by videoconferencing (FBT-V) for adolescent anorexia nervosa during the COVID-19 pandemic.

Family-Based Treatment (FBT)-the most widely supported treatment for pediatric eating disorders-transitioned to virtual delivery in many programs due to COVID-19. Using a blended implementation approach, we systematically examined therapist adherence to key components of FBT and fidelity to FBT by videoconferencing (FBT-V), preliminary patient outcomes, and team experiences with our FBT-V implementation approach as well as familial perceptions of FBT-V effectiveness. We examined our implementation approach across four pediatric eating disorder programs in Ontario, Canada, using mixed methods. Participants included therapists (n = 8), medical practitioners (n = 4), administrators (n = 6), and families (n = 5; 21 family members in total). We developed implementation teams at each site, provided FBT-V training, and offered clinical and implementation consultation. Therapists submitted video recordings of their first four FBT-V sessions for fidelity rating, and patient outcomes. Therapists self-reported readiness, attitudes, confidence, and adherence to FBT-V. Focus groups were conducted with each team and family after the first four sessions of FBT-V. Quantitative data were analyzed using repeated measures ANOVA. Qualitative data were analyzed using directed and summative content analysis. Therapists adhered to key FBT components and maintained FBT-V fidelity. Changes in therapists' readiness, attitudes, and confidence in FBT-V over time were not significant. All patients gained weight. Focus groups revealed implementation facilitators/barriers, positives/negatives surrounding FBT-V training and consultation, suggestions for improvement, and effectiveness attributed to FBT-V. Our implementation approach appeared to be feasible and acceptable. Future research with a larger sample is required, furthering our understanding of this approach and exploring how organizational factors influence treatment fidelity.

We qualitatively and quantitatively examined the initial implementation (the first four sessions) of Family-Based Treatment (FBT) delivered by videoconferencing (FBT-V) during the COVID-19 pandemic using an evidence-based implementation approach. This included developing implementation teams (consisting of a lead therapist, medical practitioner, and program administrator) at each site, providing FBT-V training to all participants, and offering clinical consultation to all participating therapists and implementation consultation to implementation teams. Therapists were required to submit video recordings of their first four FBT-V sessions. Therapist adherence to key components of FBT as well as fidelity to the FBT-V model, team and family experiences with FBT-V, and preliminary patient outcomes (e.g., weight gain) were examined. Our findings suggest that our implementation approach was feasible and acceptable; therapists adhered to key FBT components and maintained FBT-V fidelity, patients gained weight, and teams and families expressed satisfaction with our intervention. Further research is needed with a larger sample and for a longer duration.

Experiences of Families, Staff, Volunteers, and Administrators With Namaste Care for Persons With Advanced Dementia in Canadian Long-Term Care Homes.

OBJECTIVE: To explore the experiences of the Namaste Care intervention for persons with advanced dementia (ie, moderate and late-stage) in long-term care (LTC). DESIGN: A qualitative descriptive design was used. Staff Carers (eg, personal support worker, nurse, or activity aide) delivered Namaste Care with the support of volunteers in a small group. Activities provided during the Namaste Care sessions to enhance quality of life included massages, aromatherapy, music, and snacks/beverages. SETTING AND PARTICIPANTS: Family carers of residents with advanced dementia, LTC staff, administrators, and volunteers from 2 Canadian LTC homes, located in a midsize metropolitan area, were included. METHODS: Experiences and acceptability of Namaste Care was assessed through semistructured interviews ranging from 30 to 60 minutes following the 6-month study duration period with family carers, LTC staff, administrators, and volunteers. Thematic analysis was used for interview transcripts. RESULTS: A total of 16 family carers and 21 LTC staff, administrators, and volunteers participated in the study. Namaste Care was found to be acceptable and successful in enhancing the quality of life of residents due to collaborative efforts of all group of participants. Families, volunteers, and staff noted positive responses in residents, such as smiling and laughing. The program environment supported the development of relationships within the LTC community, which included families, residents, staff, and volunteers. CONCLUSIONS AND IMPLICATIONS: Namaste Care was perceived by the LTC community as an acceptable intervention for persons with advanced dementia. It was perceived as offering multiple benefits for residents with advanced dementia such as improved communication and mood.

Feasibility and Effects of Namaste Care for Persons with Advanced Dementia in Canadian Long-Term Care Homes.

OBJECTIVE: To evaluate the feasibility and effects of the Namaste Care intervention for persons with advanced dementia (ie, moderate and late-stage) in long-term care (LTC) and their family carers. DESIGN: A pre-posttest study design. Staff carers delivered Namaste Care for residents with the support of volunteers in a small group setting. Activities provided included aromatherapy, music, and snacks/beverages. SETTING AND PARTICIPANTS: Residents with advanced dementia and family carers from 2 Canadian LTC homes, located in a midsize metropolitan area, were included. METHODS: Feasibility was evaluated using a research activity log. Outcome data for residents (ie, quality of life, neuropsychiatric symptoms, pain) and family carers (ie, role stress, quality of family visits) were collected at baseline and 3 and 6 months of the intervention. Descriptive analyses and generalized estimating equations were used for quantitative data. RESULTS: A total of 53 residents with advanced dementia and 42 family carers participated in the study. Mixed findings were found for feasibility as not all intervention targets were met. There was a significant improvement in resident neuropsychiatric symptoms at the 3-month time point only (95% CI -9.39, -0.39; P = .033) and family carer role stress at both time points (3-month 95% CI -37.40, -1.80; P = .031; 6-month 95% CI -48.90, -2.09; P = .033). CONCLUSIONS AND IMPLICATIONS: Namaste Care is an intervention with preliminary evidence of impact. Feasibility findings revealed that not all targets were met as the intended number of sessions were not delivered. Future research should explore how many sessions per week are required to lead to an impact. It is important to assess outcomes for both residents and family carers, and to consider enhancing family engagement in delivering the intervention. Given the promise of this intervention, a large-scale randomized controlled trial with a longer follow-up should be conducted to further evaluate its outcomes.

Help-seeking attitudes and behaviours among youth with eating disorders: a scoping review.

BACKGROUND: Although early intervention is crucial in interrupting the development of eating disorders, little is currently known about help-seeking behaviours among individuals experiencing eating disorder symptoms. Given that eating disorders typically begin early in life, it is necessary to investigate the processes employed by children, adolescents, and emerging adults when seeking services for troubling symptoms. This is a growing concern as the COVID-19 pandemic has resulted in an increase in the number of individuals engaging in disordered eating behaviours. This scoping review explores the current state of the literature for evidence on how youth with eating disorder symptoms seek help, with the aim of better understanding how to identify and treat more individuals earlier. METHODS: Using scoping review methodology, we searched seven databases for studies published from January 2000 to April 2021 that reported on help-seeking attitudes, behaviours, and healthcare utilization patterns for children and adolescents (< 18 years), emerging adults (18-25 years), and a mixture of these groups (< 25 years). Seven thousand, two hundred, and eighteen articles were identified for review. After duplicates were removed, three reviewers independently screened titles and abstracts and reviewed full-text articles. Findings related to help-seeking activity were extracted from the 62 articles that were ultimately included in this scoping review. RESULTS: Study findings were summarized into help-seeking patterns (i.e., rates, types) as well as factors ranging from the individual level to society that influenced help-seeking behaviour. Many youth meeting eating disorder criteria were not seeking help. Notable barriers to help-seeking included poor mental health literacy, experiences with healthcare providers who failed to detect and lacked knowledge about eating disorders, minimal support from family and friends, and stigma surrounding eating disorders and help-seeking for mental health concerns. CONCLUSIONS: The results of this scoping review can be used to inform early intervention and health promotion program development. Future research should focus on the help-seeking attitudes and activities among underrepresented groups with eating disorders (e.g., men, ethnic and gender minorities), the perspectives of family and other supporters in the help-seeking process for youth, and retrospective accounts from adults with lived experience of an eating disorder. Plain English summary Addressing and interrupting eating disorder-related thoughts and behaviours as soon as possible, with the help of a mental health professional, leads to better outcomes for youth struggling with an eating disorder. However, little is known about what prompts youth to talk about their weight, body, or eating concerns with someone-like their parent, friend, teacher, guidance counsellor, or primary care practitioner. This review explores the available published research on help-seeking patterns and preferences among youth with eating disorder concerns. Our team followed a standardized process to find 62 relevant articles for this paper. Of note, many young people who reported eating disorder concerns were not seeking help for themselves. Feeling supported by family and their primary care provider, understanding the signs of an eating disorder, and not feeling shame for reaching out for help reportedly led youth to speak up about their concerns. The findings have clinical implications for learning effective ways to help youth feel safe to speak freely about their eating disorder-related concerns, which enhances the chances of intervening early and catching symptoms before they worsen.

"I'm not alone": a qualitative report of experiences among parents of children with eating disorders attending virtual parent-led peer support groups.

BACKGROUND: The treatment for children with eating disorders (EDs) requires extensive involvement of parents. The parents of children with EDs have voiced a need for greater support, including connecting with other parents with lived experience of caring for a child with an ED. We aimed to qualitatively explore parental experiences of these groups, including their benefits and areas for improvement. METHODS: This study examined the delivery of four virtual parent-led peer support groups in Ontario, Canada for parents of children with EDs with approximately 10 parent participants per group and two parent facilitators leading each group. Parents (n = 44) were asked to attend 12 bi-weekly support group sessions over 6 months, and then complete an individual end-of-study qualitative interview. Interview data were analyzed using content analysis, following the qualitative description design. RESULTS: Thirty-six parents completed the end-of-study qualitative interview. Participants shared their experiences and impressions related to the group's structure and content. Notable helpful aspects of the group included being able to receive support from those with similar experiences, access to education and resources about EDs, and being able to support others. Suggestions for improvements were made, which included organizing groups according to the child's ED diagnosis or duration of illness. CONCLUSION: The findings indicate that this intervention is acceptable to parents and is perceived as helpful. Future research is needed to strengthen this support group model and to study its effects for parents in different settings and for parents of children with various EDs. TRIAL REGISTRATION: ClinicalTrials.gov NCT04686864.

The treatment of children who have eating disorders (EDs) requires extensive involvement from parents. Parents have voiced a need for greater support, and one way to meet this need is through peer support. Using end-of-study interviews, this study qualitatively described the experiences of parents of children who have EDs who participated in virtual parent-led peer support groups (vPLPSGs) for 6 months. Our findings suggest that vPLPSGs are beneficial for parents of children who have EDs. Participants had positive perceptions of the group organization and structure, the parent facilitators, and other parent attendees, and valued the support and educational resources received in the group. Parents noted it was particularly helpful to be able to speak with other parents who understood their experiences, which helped them feel less alone in their difficulties with their child. Parents also noted an improvement in their relationship with their child who has an ED, and believed that these groups should be readily available and accessible. Suggestions for improvement included dividing groups based on children's ED diagnosis, duration of illness, and geographical location. Further expansion and study of these groups is warranted, as they appear to be a valuable support for families affected by EDs.

Developing country-specific questions about end-of-life care for nursing home residents with advanced dementia using the nominal group technique with family caregivers.

OBJECTIVE: We aimed to develop question prompt lists (QPLs) for family caregivers of nursing home residents with advanced dementia in the context of a study involving Canada, the Czech Republic, Italy, the Netherlands, the United Kingdom and Ireland, and to explore cross-national differences. QPLs can encourage family caregivers to ask questions about their relative's end-of-life care. METHODS: We used nominal group methods to create country-specific QPLs. Family caregivers read an information booklet about end-of-life care for people with dementia, and generated questions to ask healthcare professionals. They also selected questions from a shortlist. We analyzed and compared the QPLs using content analysis. RESULTS: Four to 20 family caregivers per country were involved. QPLs ranged from 15 to 24 questions. A quarter (24%) of the questions appeared in more than one country's QPL. One question was included in all QPLs: "Can you tell me more about palliative care in dementia?". CONCLUSION: Family caregivers have many questions about dementia palliative care, but the local context may influence which questions specifically. Local end-user input is thus important to customize QPLs. PRACTICE IMPLICATIONS: Prompts for family caregivers should attend to the unique information preferences among different countries. Further research is needed to evaluate the QPLs' use.

A qualitative evaluation of team and family perceptions of family-based treatment delivered by videoconferencing (FBT-V) for adolescent Anorexia Nervosa during the COVID-19 pandemic.

BACKGROUND: During the COVID-19 pandemic, outpatient eating disorder care, including Family-Based Treatment (FBT), rapidly transitioned from in-person to virtual delivery in many programs. This paper reports on the experiences of teams and families with FBT delivered by videoconferencing (FBT-V) who were part of a larger implementation study. METHODS: Four pediatric eating disorder programs in Ontario, Canada, including their therapists (n = 8), medical practitioners (n = 4), administrators (n = 6), and families (n = 5), participated in our study. We provided FBT-V training and delivered clinical consultation. Therapists recorded and submitted their first four FBT-V sessions. Focus groups were conducted with teams and families at each site after the first four FBT-V sessions. Focus group transcripts were transcribed verbatim and key concepts were identified through line-by-line reading and categorizing of the text. All transcripts were double-coded. Focus group data were analyzed using directed and summative qualitative content analysis. RESULTS: Analysis of focus group data from teams and families revealed four overarching categories-pros of FBT-V, cons of FBT-V, FBT-V process, and suggestions for enhancing and improving FBT-V. Pros included being able to treat more patients and developing a better understanding of family dynamics by being virtually invited into the family's home (identified by teams), as well as convenience and comfort (identified by families). Both teams and families recognized technical difficulties as a potential con of FBT-V, yet teams also commented on distractions in family homes as a con, while families expressed difficulties in developing therapeutic rapport. Regarding FBT-V process, teams and families discussed the importance and challenge of patient weighing at home. In terms of suggestions for improvement, teams proposed assessing a family's suitability or motivation for FBT-V to ensure it would be appropriate, while families strongly suggested implementing hybrid models of FBT in the future which would include some in-person and some virtual sessions. CONCLUSION: Team and family perceptions of FBT-V were generally positive, indicating acceptability and feasibility of this treatment. Suggestions for improved FBT-V practices were made by both groups, and require future investigation, such as examining hybrid models of FBT that involve in-person and virtual elements. Trial registration ClinicalTrials.gov NCT04678843 .

Evaluating the Implementation of the Conversation Starter Kit in Long Term Care.

INTRODUCTION: Advance care planning can improve the quality of life for residents in long-term care homes and reduce stress for families. However, care home staff and families often lack knowledge about advance care planning, making it especially difficult for residents with dementia to communicate their care plan wishes. A Conversation Starter Kit may increase advance care planning awareness among staff and families. OBJECTIVES: This study evaluated an advance care planning intervention, the Conversation Starter Kit booklet, for use in long term care homes. METHODS: Data were collected at three long-term care homes in southern Ontario. We collected data from 55 residents who were able to make decisions on their own paired with 11 family members of these residents. We also collected data from 24 family members of residents who were unable to make decisions on their own. This study used a quasi-experimental, one group pre/post design. Quantitative surveys were administered before and after a three-month advance care planning intervention. An additional structured interview was completed at the end of the intervention period, which included both closed and open-ended questions to assess perceptions about the booklet's use or non-use. RESULTS: Residents reported more engagement in advance care planning after completing the Conversation Starter Kit booklet, particularly related to asking questions to health care providers about health care decisions. Family members reported feeling very certain that they would be able to make decisions on behalf of the resident but felt less certain after completing the booklet, implying the booklet raised their awareness of the types of decisions they might need to make, hopefully prompting them to be more prepared for decisions in the future. CONCLUSIONS: An advance care planning intervention - The Conversation Starter Kit booklet - appears acceptable and easy to use for residents and family members/friends in long-term care and can improve resident engagement in advance care planning. Although using the booklet may decrease efficacy for decision making among family members of long-term care residents, it may highlight the importance of more actionable engagement in advance care planning among residents, their families/friends, and staff.