TY - JOUR
AU - Herbert, Linda
AB - Abstract Objective  Parents of young children with newly diagnosed food allergy (FA) are at risk for poor psychosocial outcomes due to FA’s life-threatening nature and demanding management routines. Presently, there are no interventions to support FA parents during this adjustment phase. This single-arm pilot study explores the feasibility, acceptability, and preliminary efficacy of a novel intervention using peer mentorship to improve psychosocial functioning in parents of young children with newly diagnosed FA. Methods  Parent mentors were trained in mentorship and ethics and then matched with a mentee for a 6-month intervention period. Mentees, parents of children (under age 5 years) diagnosed with FA within 1 year, completed baseline and follow-up questionnaires to assess demographic and medical characteristics, FA knowledge, quality of life, self-efficacy, and social support and a program evaluation. Follow-up focus groups with mentors and individual interviews with mentees were conducted. Results  Participants were 8 mentors and 10 mentees (Mage = 36.60 years, 80% Caucasian) of children ages 0–3 years (Mage = 16.15 months; 60% male). Mentees reported high acceptability for the intervention in program evaluation and interviews, noting improvements in their social support, FA-related stress, confidence in FA management, and positive changes in FA parenting behaviors. Conclusion  This study supports the use of a peer mentorship program to support parents of children with newly diagnosed FA. Future research is needed to determine how to scale this intervention to meet the needs of a large medical division. chronic illness, parents, parent psychological functioning, psychological functioning, quality of life Introduction Food allergy (FA) is a time-consuming chronic illness that impacts an estimated 8% of children in the United States (Gupta et al., 2018). At present, there is no cure for FA and severe allergic reactions can be life-threatening, or in some cases fatal (Ben-Shoshan & Clarke, 2011). Therefore, treatment is limited to prevention of allergic reactions through strict allergen avoidance and rapid treatment of allergic reactions with epinephrine. Allergen avoidance is complicated by obstacles including the uncertainty of choosing safe foods (Cummings et al., 2010), and the additional burden of educating others about FA (Rouf et al., 2012). Most FAs are diagnosed before age 5; therefore, the demands of FA management rest almost entirely on the caregiver because children are not old enough to assume management responsibility. Given that an increasing number of parents have to meet the demands of managing a child’s FA, it is essential to address the psychosocial effects of pediatric FA on parents. FA management impacts parents’ daily activities, contributes to poorer quality of life, and increases stress levels compared with parents of healthy children and children with other chronic conditions (Cummings et al., 2010; Morou et al., 2014; Valentine & Knibb, 2011). Caregiver fear and stress are largely attributed to the life-threatening nature of FA, perceived lack of control about allergen exposure, and the need for knowledge and self-efficacy regarding daily allergen avoidance and emergency management (Chong & Turner, 2019; Gillespie et al., 2007; Lebovidge et al., 2006). Many parents report feeling unprepared to navigate the nuances of allergen avoidance, manage risk, treat allergic reactions, and cope with related emotional distress, and want FA-related advice between clinic appointments (Abdurrahman et al., 2013; Hu et al., 2007). Peer mentoring is commonly implemented to increase education, improve social support, and complement medical care within many chronic condition populations. According to Ireys et al.’s (2001) social support framework, peer coaching is a type of communication that relays important information, respect, and value to the recipient. Peer mentors provide three types of support: emotional (e.g., active listening), affirmational (e.g., validating self-efficacy), and practical/informational (e.g. sharing “trade secrets”; Ireys et al., 2001). Parent self-efficacy is particularly important regarding FA management, as it is associated with better parental quality of life (Knibb et al., 2016). Therefore, peer mentoring interventions may be an effective strategy to improve quality of life for caregivers of children with FA by increasing knowledge and self-efficacy for daily FA management. Research indicates that parent mentorship interventions have been feasible with good engagement and high satisfaction for parents of children with type 1 diabetes (Channon et al., 2016; Mackey et al., 2016; Monaghan et al., 2011). Peer mentoring has not yet been studied in a FA population. A systematic review of interventions that target well-being and support for caregivers of children with FA found that two studies previously offered parental support; however, neither focused on peer mentoring and in general most studies had poor methodological quality (Sugunasingha et al., 2020). This study aims to pilot test a peer mentoring program for parents of young children newly diagnosed with FA. The study evaluates (a) its feasibility and acceptability, and (b) preliminary efficacy in improving psychosocial functioning among mentees, including FA-related knowledge, self-efficacy, and quality of life. We hypothesize that the intervention will be feasible and acceptable for mentors/mentees and that this preliminary exploration of the impact of the intervention will show trends towards improved FA psychosocial outcomes for mentees. Materials and Methods Participants All study procedures were approved by the Institutional Review Board, including the use of direct quotes in this article; there were no protocol deviations or adverse events. All research team members completed research and ethics training from The Collaborative Institutional Training Initiative (CITI). Participant recruitment occurred in a mid-Atlantic pediatric medical system with five clinic locations serving over 1,500 allergy patients each year. In this study, participants fell into two categories: (a) mentors and (b) mentees. Eligible mentors were identified as primary caregivers of a child between ages 5 and 18 years, who was diagnosed with an Immunoglobulin-E (IgE)-mediated FA (positive skin prick test or blood test confirmed by an allergist) at least 1 year prior to participation. Mentees were eligible if they identified as the primary caregiver of a child under age 5 years, who was diagnosed with an IgE-mediated FA by an allergist within the last year. All participants were required to be fluent in English and have access to a telephone to communicate with their mentor/mentee. Parents of children diagnosed with other comorbidities most common to IgE-mediated food allergies (e.g., allergic rhinitis, atopic dermatitis, drug allergy) were eligible, as this is representative of the sample population; however, parents of children with any chronic illness other than allergic diseases were excluded. Procedure Mentor Recruitment, Training, and Supervision Potential mentors were referred to the study team by any allergy provider from our clinic locations or by the allergy psychology team, as has been standard in previous mentoring studies in pediatric populations (Tully et al., 2017). A study team member then contacted potential mentors by phone to complete an initial semi-structured screener that assessed the parent's FA medical and psychosocial experiences, prior mentor or mentee experience, and availability to meet study requirements (e.g., access to communication methods, geographic location, work/childcare schedule). If a potential mentor met eligibility criteria and was interested in participation, they were invited to attend an in-person group training session at one of the allergy outpatient clinics, where written consent was obtained. The training session, led by two PhD-level pediatric psychologists who specialize in allergic conditions, focused on (a) understanding the project and the role of the parent mentor, (b) reviewing guidelines related to confidentiality, how to refer mentees to the medical team for medical advice, and crisis/emergency management, and (c) developing mentorship skills such as rapport building, active listening, discussion topics, and understanding of available resources. An outline of training topics can be found in Supplementary Table 1. Mentors received a binder that contained educational resources, training materials, and information for contacting the research team. Educational resources were a combination of handouts developed by this allergy clinic and other nonprofit organizations that address basic FA information, management practices, communication about FA, and the psychosocial impact of FA; these resources were provided as supplemental information but were not a part of the intervention. Following the in-person session, mentors completed online modules through CITI about human subjects research, privacy protections, and informed consent. Throughout their participation, mentors were in contact with the study team at least once per month via contact reports on REDCap (Research Electronic Data CAPture; Harris et al., 2009), which allowed the study team to monitor the frequency of their interactions. Mentors also participated in quarterly check-ins and group teleconference calls with one of the study team psychologists after they completed the 6-month intervention period with their first and/or second mentees. At study closure, mentors participated in a focus group via teleconferencing, facilitated by the study team psychologists, to describe their experience with the study. Mentors received $100 for training completion, $100 per mentee and $50 for participation in follow-up focus groups. Mentee Recruitment, Assessment, and Interaction With the Study Team Mentee participants were referred by their allergy provider or identified by the study team during a routine clinic visit. A study team member completed informed consent with interested participants. Mentees were then given a REDCap link to complete online baseline questionnaires from home prior to mentor assignment; once complete, they were mailed a binder with educational resources, as described in the mentor recruitment section. They were asked to complete the same set of questionnaires following the intervention at home via REDCap. Mentees were contacted by the study team, via phone or email, at least once or more frequently if mentors had connection difficulties. After completing follow-up questionnaires, they participated in an optional phone interview with a study team member to describe their experience with the study. Mentees received $10 and $25 for completing baseline and follow-up questionnaires, respectively. Intervention The peer mentor intervention had a 6-month duration. After baseline questionnaire completion, mentees were matched with a mentor based on geographic location and the child’s specific allergens as possible. Assignment was completed via a joint email, and mentors also received a separate email with a brief summary of the mentee’s child’s current FA information (e.g., child age, food allergies) to help prepare them for their initial interaction. Mentors were instructed to reach out to their mentee via phone or email within 1 week of assignment and to schedule an in-person meeting within 2 weeks. After the initial meeting, mentors and mentees were allowed greater flexibility in their frequency and mode of communication, though they were encouraged to interact at least 2 times per month. Communication occurred via in-person meetings, phone, text, and email. There was not a formal treatment protocol for interactions, though mentors were provided with a training manual that had suggestions for relevant FA topics to discuss with mentees. Dyads were allowed flexibility in the topics that they could discuss, tailored to the needs of the mentee. Mentors were instructed by the study team to primarily engage in active listening, validation, and provide their personal insight when appropriate. They had clear guidelines regarding when to refer mentees to their medical provider or the allergy psychology team. At the end of their 6-month interaction phase, mentors were instructed to have a final interaction with their mentee and decide whether or not to continue interactions beyond study participation. Mentee Assessment Measures Sociodemographics Demographic information was collected to assess child and parent age, gender, race/ethnicity, parent education level, and family income level. Child Medical Information Specific medical information such as date of FA diagnosis, current FAs, comorbid allergic diseases, epinephrine auto-injector prescription status, and allergic reaction history was obtained from mentees. Quality of Life Mentees completed the FA Quality of Life Questionnaire—Parental Burden (FAQLQ-PB; Cohen et al., 2004), a 17-item measure which assesses the impact of FA on parents' daily lives on a 7-point Likert scale, summed for a total score; greater scores indicate greater burden. Internal consistency among this sample was high (Cronbach’s α = .95) and it has been shown to be a valid and reliable measure of parental burden in multiple samples (Knibb & Stalker, 2013; Springston et al., 2010). FA Self-Efficacy Mentees completed the FA Self-Efficacy Scale (FASE), a 21-item measure that uses a 100-point visual analog scale. Higher scores indicate a greater degree of confidence in one’s ability to manage food allergies. The FASE is valid and reliable among parents (Knibb et al., 2015, 2016); internal consistency for this sample was high (Cronbach’s α = .94). FA Perceived Impact To measure perceived FA severity and impact, participants completed the FA Independent Measure (FAIM; Flokstra-de Blok et al., 2009), a 4-item measure of perceptions of risk of allergen exposure, chance of a severe reaction, chance of dying, and ability to engage in proper treatment. Items are rated on a 6-point Likert scale which are summed for a total score of disease-specific outcomes. Face validity of the measure was confirmed by expert opinion and the items have convergent validity with items on FA quality of life scales (van der Velde et al., 2010). Parent Social Support Mentees’ perceptions of social support related to caring for their child were measured using the Perceived Social Support for Caregiving Scale (PSSC; Goodman, 1991), a 12-item questionnaire that yields two subscales, Social Support and Social Conflict, with higher scores indicating better social support and more social conflict. The PCCS is a reliable and valid measure (Goodman, 1991). Internal consistency in this sample for the Social Support (Cronbach’s α= .92–.94) and Social Conflict scales were high (Cronbach’s α= .86–.92). FA Knowledge The FA Knowledge Test (FAKT) is a 57-item measure of FA knowledge for adults. Items are scored as correct/incorrect, and a sum score is generated. The FAKT was found to be highly reliable with validity analyses revealing positive score correlations with parent age, education, insurance status, access to FA information, and epinephrine auto-injector use (Hahn et al., 2017). Program Evaluation The study team developed a 24-item questionnaire in which mentees used a 5-point Likert scale to report on their perceptions of the intervention. Items addressed general satisfaction and relevance, satisfaction with their specific mentor interactions (e.g., frequency, content), and perceptions of improved FA-functioning as a result of the intervention (e.g., FA-related quality of life, stress, confidence, social support). Data Analytic Plan All analyses were conducted in SPSS Version 17.0. Descriptive statistics were used to analyze demographic and medical variables. To evaluate acceptability and feasibility we examined quantitative descriptive data from the mentor program evaluation survey. We also examined transcripts and interviewer notes from the postintervention mentor focus groups and mentee interviews; these were meant to provide a general overview of the feedback rather than a systematic qualitative analysis. Pre- and postintervention outcome measure means were compared using paired sample t tests. Because this is a pilot study with a small sample size, we were primarily interested in examining the direction of change across each of these variables. To address missing items in the FAQLQ-PB and FASE, we prorated items to calculate means; one participant’s FASE was excluded for missing 6 out of the 21 items. Missing items in the FAKT were considered incorrect and factored into a participant's total score accordingly. There were no missing items in any other completed measures. There were participants who did not complete some measures at follow-up; total N for each measure is reported when presenting the results. Results Demographics Mentors were eight mothers (62.5% Caucasian) of children ages 6–19 years (Mage = 10.4 years; 60% female) who were currently managing between one and eight FAs (Mallergies = 4.0 foods) and had between 5 and 16 years of experience with FA management. Children of mentors were diagnosed with a variety of FAs; all top nine allergens including peanut, tree nut, cow’s milk, egg, wheat, fish, shellfish, and sesame were represented except for soy. Mentees were 10 mothers (Mage = 36.60 years, 80% Caucasian) of young children ages 0–3 years (Mage = 16.15 months; 60% male). See Table I for demographic data. On average, children of mentees were diagnosed with a FA by an allergist 5.75 months prior to participation. All children were prescribed an epinephrine auto-injector. At baseline, children had between one and eight FA diagnoses (Mallergens = 3.80); by follow-up this ranged from 3 to 9 (Mallergens = 4.57). Specific allergen information and comorbid diagnoses can be found in Table I. At baseline, mentees reported that all children had experienced at least one allergic reaction with 40% having an anaphylactic episode, 30% having parent-administered epinephrine, and 50% requiring transfer to the emergency department at least once for treatment of an allergic reaction. Table I. Mentor and Mentee Parent and Child Demographic and Medical Information . Mentor frequency . Mentor % . Mentee frequency . Mentee % . M . SD . Range . Parent demographics  Parent age (years) 36.60 4.33 30–44  Relationship to child (% mother) 10 100  Household income (% ≥$200,000) 6 60  Household income (% $150,000–$199,999) 2 20  Household income (% ≤$55,000) 2 20  Education (% Bachelor’s degree or more) 8 80  Education (% some college) 2 20  Employment Status (% full- time) 9 90  Parent marital status (% married) 8 80 Child demographics  Child age (months) 16.15 6.62 7.0-32.0  Child sex (% male) 6 60  Child ethnicity (% Caucasian) 5 62.5 7 70  Child ethnicity (% Black) 2 25 2 20  Child ethnicity (% Biracial) 0 0 1 10  Child ethnicity (% Asian) 1 12.5 0 0 Child medical information  Food Allergies   Peanut 9 82 8 80   Egg 4 36 7 70   Tree nuts 8 73 5 50   Cow’s milk 5 45 3 30   Sesame 4 36 3 30   Shellfish 1 9 2 20   Soy 1 9 2 20   Wheat 1 9 1 10   Fish 1 9 0 0  Total allergens at baseline 3.80 2.53 1-8  Total allergens at follow-up 4.57 2.44 3-9  Age at initial diagnosis (months) 10.40 5.75 5-24  Comorbid conditions   Eczema 9 90   Environmental allergies 1 10  Allergic reaction history   Experienced an allergic reaction (percentage) 10 100   Experienced anaphylaxis 4 40   Went to emergency department 5 50  Epinephrine auto-injector usage   Been prescribed epinephrine auto-injector 10 100   Used epinephrine auto-injector on Child 3 30 . Mentor frequency . Mentor % . Mentee frequency . Mentee % . M . SD . Range . Parent demographics  Parent age (years) 36.60 4.33 30–44  Relationship to child (% mother) 10 100  Household income (% ≥$200,000) 6 60  Household income (% $150,000–$199,999) 2 20  Household income (% ≤$55,000) 2 20  Education (% Bachelor’s degree or more) 8 80  Education (% some college) 2 20  Employment Status (% full- time) 9 90  Parent marital status (% married) 8 80 Child demographics  Child age (months) 16.15 6.62 7.0-32.0  Child sex (% male) 6 60  Child ethnicity (% Caucasian) 5 62.5 7 70  Child ethnicity (% Black) 2 25 2 20  Child ethnicity (% Biracial) 0 0 1 10  Child ethnicity (% Asian) 1 12.5 0 0 Child medical information  Food Allergies   Peanut 9 82 8 80   Egg 4 36 7 70   Tree nuts 8 73 5 50   Cow’s milk 5 45 3 30   Sesame 4 36 3 30   Shellfish 1 9 2 20   Soy 1 9 2 20   Wheat 1 9 1 10   Fish 1 9 0 0  Total allergens at baseline 3.80 2.53 1-8  Total allergens at follow-up 4.57 2.44 3-9  Age at initial diagnosis (months) 10.40 5.75 5-24  Comorbid conditions   Eczema 9 90   Environmental allergies 1 10  Allergic reaction history   Experienced an allergic reaction (percentage) 10 100   Experienced anaphylaxis 4 40   Went to emergency department 5 50  Epinephrine auto-injector usage   Been prescribed epinephrine auto-injector 10 100   Used epinephrine auto-injector on Child 3 30 Open in new tab Table I. Mentor and Mentee Parent and Child Demographic and Medical Information . Mentor frequency . Mentor % . Mentee frequency . Mentee % . M . SD . Range . Parent demographics  Parent age (years) 36.60 4.33 30–44  Relationship to child (% mother) 10 100  Household income (% ≥$200,000) 6 60  Household income (% $150,000–$199,999) 2 20  Household income (% ≤$55,000) 2 20  Education (% Bachelor’s degree or more) 8 80  Education (% some college) 2 20  Employment Status (% full- time) 9 90  Parent marital status (% married) 8 80 Child demographics  Child age (months) 16.15 6.62 7.0-32.0  Child sex (% male) 6 60  Child ethnicity (% Caucasian) 5 62.5 7 70  Child ethnicity (% Black) 2 25 2 20  Child ethnicity (% Biracial) 0 0 1 10  Child ethnicity (% Asian) 1 12.5 0 0 Child medical information  Food Allergies   Peanut 9 82 8 80   Egg 4 36 7 70   Tree nuts 8 73 5 50   Cow’s milk 5 45 3 30   Sesame 4 36 3 30   Shellfish 1 9 2 20   Soy 1 9 2 20   Wheat 1 9 1 10   Fish 1 9 0 0  Total allergens at baseline 3.80 2.53 1-8  Total allergens at follow-up 4.57 2.44 3-9  Age at initial diagnosis (months) 10.40 5.75 5-24  Comorbid conditions   Eczema 9 90   Environmental allergies 1 10  Allergic reaction history   Experienced an allergic reaction (percentage) 10 100   Experienced anaphylaxis 4 40   Went to emergency department 5 50  Epinephrine auto-injector usage   Been prescribed epinephrine auto-injector 10 100   Used epinephrine auto-injector on Child 3 30 . Mentor frequency . Mentor % . Mentee frequency . Mentee % . M . SD . Range . Parent demographics  Parent age (years) 36.60 4.33 30–44  Relationship to child (% mother) 10 100  Household income (% ≥$200,000) 6 60  Household income (% $150,000–$199,999) 2 20  Household income (% ≤$55,000) 2 20  Education (% Bachelor’s degree or more) 8 80  Education (% some college) 2 20  Employment Status (% full- time) 9 90  Parent marital status (% married) 8 80 Child demographics  Child age (months) 16.15 6.62 7.0-32.0  Child sex (% male) 6 60  Child ethnicity (% Caucasian) 5 62.5 7 70  Child ethnicity (% Black) 2 25 2 20  Child ethnicity (% Biracial) 0 0 1 10  Child ethnicity (% Asian) 1 12.5 0 0 Child medical information  Food Allergies   Peanut 9 82 8 80   Egg 4 36 7 70   Tree nuts 8 73 5 50   Cow’s milk 5 45 3 30   Sesame 4 36 3 30   Shellfish 1 9 2 20   Soy 1 9 2 20   Wheat 1 9 1 10   Fish 1 9 0 0  Total allergens at baseline 3.80 2.53 1-8  Total allergens at follow-up 4.57 2.44 3-9  Age at initial diagnosis (months) 10.40 5.75 5-24  Comorbid conditions   Eczema 9 90   Environmental allergies 1 10  Allergic reaction history   Experienced an allergic reaction (percentage) 10 100   Experienced anaphylaxis 4 40   Went to emergency department 5 50  Epinephrine auto-injector usage   Been prescribed epinephrine auto-injector 10 100   Used epinephrine auto-injector on Child 3 30 Open in new tab Feasibility/Engagement The study ran from April 2018 through January 2020. The research team initially identified and screened seven potential mentors. Five parents were identified as acceptable mentors based on their child’s FA experiences, openness to mentorship, and time availability, whereas two other parents reported familial or time barriers that impeded participation. Five mentors completed the 6-month intervention period with one mentee. The study team conducted an additional round of mentorship and three original mentors were interested in being assigned another mentee (others excluded only due to time availability). Three additional mentors were screened, trained, and two were paired with a mentee (one was not assigned a mentee due to recruitment timing). In total, 8 trained mentors were paired with 10 mentees. Mentee recruitment took place from April 2018 through August 2019. In total, 16 parents were approached in clinic and consented to participate. Ten of these participants completed their baseline assessment and the 6-month intervention, and nine completed their follow-up assessment. The other six participants did not complete their baseline questionnaires after three phone call and email reminders and thus were considered run-in failures. Feedback from those mentees who did not complete baseline questionnaires but were able to be reached suggested that they perceived baseline questionnaires to be too time consuming or they recognized improvements in their adjustment to FA management and did not think they needed a mentor. Just over half of the mentors reported interacting with their mentee between 2 and 5 times (55%); some interacted 6–11 times (22.2%), whereas others interacted 12 or more times (two times per month; 22.2%). The majority of mentees and mentors met in-person at least once (66.7%). They also interacted by phone (77.8%), email (77.8%), and text message (55.6%). In the low-frequency interaction group (2–5 times), at least one of those interactions was an in-person meeting or a lengthy phone conversation. Acceptability Mentees reported a high level of intervention acceptability. Most mentees (66.6%) indicated that they were “very” or “extremely” satisfied with their program experience and 88.9% would recommend the program to other parents of children with newly diagnosed FA. Two thirds of the sample (66.6%) reported that the program was “very” or “extremely” relevant to their experiences and improved their FA knowledge “a lot.” Just over half of mentees (55.5%) indicated that they were “very” or “extremely” satisfied with the frequency of mentor contact. All mentees reported that their mentors were “very” or “extremely” supportive. The majority indicated that interactions improved their social support “a lot” or “completely” (77.8%), decreased FA-related stress “a lot” (55.6%), and improved mentee’s confidence in FA management “a lot” or “completely” (77.8%). Due to interactions with their mentor, most mentees believed that their FA management changed “a lot” (66.6%) and that their FA-related parental style (e.g., teaching the child about symptoms of an allergic reaction) changed “a lot” or “completely” (66.6%). Additional acceptability data is presented in Table II. Table II. Parent Mentor Program Evaluation (N = 9) . M . SD . Range . % “very” or “extremely” .  Overall satisfaction with PMP experience 2.89 1.27 1-4 66.6  PMP was relevant for managing child’s FA diagnosis 2.78 1.28 0-4 66.6  Interactions with mentor were informative 2.89 1.27 1-4 66.6  Mentor was supportive 3.56 0.53 3-4 100  Satisfied with frequency of contact with mentor 2.67 1.00 1-4 55.5 M SD Range % “a lot or completely”  Interactions with mentor improved FA knowledge 2.44 .882 1–3 66.6  Interactions with mentor changed parenting related to FA 2.56 1.33 0–4 66.6  Interactions with mentor changed how parent manages FA 2.22 1.30 0–3 66.6  Interactions with mentor improved social support 2.67 1.11 0–4 77.8  Interactions with mentor decreased stress related to FA management 2.11 1.27 0–3 55.6  Interactions with mentor improved quality of life related to FA 2.22 0.97 0–3 44.4  Interactions with mentor improved confidence in FA management 2.56 1.26 0–4 77.8 M SD Range % yes  Would recommend PMP to other parents of children with FA 1.1 .33 1–2 88.9 Frequency % Frequency of contact  2–6 times 5 55.6  6–11 times 2 22.2  12+ times 2 22.2 Mode of interaction (yes)  In-person 6 66.7  Phone 7 77.8  Text message 5 55.6  Email 7 77.8 Importance of match characteristics  Mentor location 2 22.2  Mentor personality 6 66.7  Age of mentor’s child(ren) 4 44.4  Specific FA of mentor’s child 5 55.6  Mentor’s FA experiences 8 88.9  Site where mentor’s child receives care 1 11.1 . M . SD . Range . % “very” or “extremely” .  Overall satisfaction with PMP experience 2.89 1.27 1-4 66.6  PMP was relevant for managing child’s FA diagnosis 2.78 1.28 0-4 66.6  Interactions with mentor were informative 2.89 1.27 1-4 66.6  Mentor was supportive 3.56 0.53 3-4 100  Satisfied with frequency of contact with mentor 2.67 1.00 1-4 55.5 M SD Range % “a lot or completely”  Interactions with mentor improved FA knowledge 2.44 .882 1–3 66.6  Interactions with mentor changed parenting related to FA 2.56 1.33 0–4 66.6  Interactions with mentor changed how parent manages FA 2.22 1.30 0–3 66.6  Interactions with mentor improved social support 2.67 1.11 0–4 77.8  Interactions with mentor decreased stress related to FA management 2.11 1.27 0–3 55.6  Interactions with mentor improved quality of life related to FA 2.22 0.97 0–3 44.4  Interactions with mentor improved confidence in FA management 2.56 1.26 0–4 77.8 M SD Range % yes  Would recommend PMP to other parents of children with FA 1.1 .33 1–2 88.9 Frequency % Frequency of contact  2–6 times 5 55.6  6–11 times 2 22.2  12+ times 2 22.2 Mode of interaction (yes)  In-person 6 66.7  Phone 7 77.8  Text message 5 55.6  Email 7 77.8 Importance of match characteristics  Mentor location 2 22.2  Mentor personality 6 66.7  Age of mentor’s child(ren) 4 44.4  Specific FA of mentor’s child 5 55.6  Mentor’s FA experiences 8 88.9  Site where mentor’s child receives care 1 11.1 Note. FA = Food Allergy; PMP = Parent Mentoring Program. Open in new tab Table II. Parent Mentor Program Evaluation (N = 9) . M . SD . Range . % “very” or “extremely” .  Overall satisfaction with PMP experience 2.89 1.27 1-4 66.6  PMP was relevant for managing child’s FA diagnosis 2.78 1.28 0-4 66.6  Interactions with mentor were informative 2.89 1.27 1-4 66.6  Mentor was supportive 3.56 0.53 3-4 100  Satisfied with frequency of contact with mentor 2.67 1.00 1-4 55.5 M SD Range % “a lot or completely”  Interactions with mentor improved FA knowledge 2.44 .882 1–3 66.6  Interactions with mentor changed parenting related to FA 2.56 1.33 0–4 66.6  Interactions with mentor changed how parent manages FA 2.22 1.30 0–3 66.6  Interactions with mentor improved social support 2.67 1.11 0–4 77.8  Interactions with mentor decreased stress related to FA management 2.11 1.27 0–3 55.6  Interactions with mentor improved quality of life related to FA 2.22 0.97 0–3 44.4  Interactions with mentor improved confidence in FA management 2.56 1.26 0–4 77.8 M SD Range % yes  Would recommend PMP to other parents of children with FA 1.1 .33 1–2 88.9 Frequency % Frequency of contact  2–6 times 5 55.6  6–11 times 2 22.2  12+ times 2 22.2 Mode of interaction (yes)  In-person 6 66.7  Phone 7 77.8  Text message 5 55.6  Email 7 77.8 Importance of match characteristics  Mentor location 2 22.2  Mentor personality 6 66.7  Age of mentor’s child(ren) 4 44.4  Specific FA of mentor’s child 5 55.6  Mentor’s FA experiences 8 88.9  Site where mentor’s child receives care 1 11.1 . M . SD . Range . % “very” or “extremely” .  Overall satisfaction with PMP experience 2.89 1.27 1-4 66.6  PMP was relevant for managing child’s FA diagnosis 2.78 1.28 0-4 66.6  Interactions with mentor were informative 2.89 1.27 1-4 66.6  Mentor was supportive 3.56 0.53 3-4 100  Satisfied with frequency of contact with mentor 2.67 1.00 1-4 55.5 M SD Range % “a lot or completely”  Interactions with mentor improved FA knowledge 2.44 .882 1–3 66.6  Interactions with mentor changed parenting related to FA 2.56 1.33 0–4 66.6  Interactions with mentor changed how parent manages FA 2.22 1.30 0–3 66.6  Interactions with mentor improved social support 2.67 1.11 0–4 77.8  Interactions with mentor decreased stress related to FA management 2.11 1.27 0–3 55.6  Interactions with mentor improved quality of life related to FA 2.22 0.97 0–3 44.4  Interactions with mentor improved confidence in FA management 2.56 1.26 0–4 77.8 M SD Range % yes  Would recommend PMP to other parents of children with FA 1.1 .33 1–2 88.9 Frequency % Frequency of contact  2–6 times 5 55.6  6–11 times 2 22.2  12+ times 2 22.2 Mode of interaction (yes)  In-person 6 66.7  Phone 7 77.8  Text message 5 55.6  Email 7 77.8 Importance of match characteristics  Mentor location 2 22.2  Mentor personality 6 66.7  Age of mentor’s child(ren) 4 44.4  Specific FA of mentor’s child 5 55.6  Mentor’s FA experiences 8 88.9  Site where mentor’s child receives care 1 11.1 Note. FA = Food Allergy; PMP = Parent Mentoring Program. Open in new tab Mentee Assessments Paired sample t tests were used to analyze differences between mentee psychosocial variables at baseline and follow-up. There were no statistically significant differences for any assessments (ps > .05), yet most means trended in the expected directions, demonstrating improvement in psychosocial functioning. On the FAQLQ-PB, mentees’ scores decreased from 3.32 to 2.33 (scale 0–6, greater scores indicate greater parental burden; 95% CI = −2.32, 0.06). On the FASE, mentees’ scores increased from 73.09 to 77.72 (scale 0–100, greater scores indicate greater self-efficacy; 95% CI = −15.96, 33.00). Parents performed better on the FAKT (baseline 73.1%; follow-up 87.5%; 95% CI = −3.24, 8.84), suggesting greater FA knowledge. On the PSSC, parents reported improved social support (scale 9–45, greater scores indicate more support; baseline 24.90; follow-up 33.00; 95% CI = −10.82, 27.22) and decreased social conflict (scale 3–15; greater scores indicate more conflict; baseline 9.30, follow-up 8.0; 95% CI = −6.26, 1.86). Scores on the FAIM stayed relatively the same (baseline 3.90, follow-up 3.73; 95% CI = −1.07, 0.74). See Table III for more detail. Table III. Baseline and Follow-Up Mentee Scores . Baseline . Follow-up . . . . . M . SD . M . SD . t . df . N . p value . Food Allergy Quality of Life—Parental Burden 3.46 1.23 2.33 1.01 2.45 5 6 .06 Food Allergy Impact Measure 3.90 0.72 3.73 0.28 −0.97 4 5 .64 Food Allergy Self-Efficacy Scale 69.20 19.01 77.72 14.62 0.51 4 5 .39 Food Allergy Knowledge Test 46.20 8.98 49.00 4.95 −1.29 4 5 .27 Perceived Social Support for Caregivers  Social Support Subscale 24.80 10.78 33.00 9.00 −1.20 4 5 .30  Social Conflict Subscale 10.20 1.92 8.00 3.67 1.50 4 5 .21 . Baseline . Follow-up . . . . . M . SD . M . SD . t . df . N . p value . Food Allergy Quality of Life—Parental Burden 3.46 1.23 2.33 1.01 2.45 5 6 .06 Food Allergy Impact Measure 3.90 0.72 3.73 0.28 −0.97 4 5 .64 Food Allergy Self-Efficacy Scale 69.20 19.01 77.72 14.62 0.51 4 5 .39 Food Allergy Knowledge Test 46.20 8.98 49.00 4.95 −1.29 4 5 .27 Perceived Social Support for Caregivers  Social Support Subscale 24.80 10.78 33.00 9.00 −1.20 4 5 .30  Social Conflict Subscale 10.20 1.92 8.00 3.67 1.50 4 5 .21 Open in new tab Table III. Baseline and Follow-Up Mentee Scores . Baseline . Follow-up . . . . . M . SD . M . SD . t . df . N . p value . Food Allergy Quality of Life—Parental Burden 3.46 1.23 2.33 1.01 2.45 5 6 .06 Food Allergy Impact Measure 3.90 0.72 3.73 0.28 −0.97 4 5 .64 Food Allergy Self-Efficacy Scale 69.20 19.01 77.72 14.62 0.51 4 5 .39 Food Allergy Knowledge Test 46.20 8.98 49.00 4.95 −1.29 4 5 .27 Perceived Social Support for Caregivers  Social Support Subscale 24.80 10.78 33.00 9.00 −1.20 4 5 .30  Social Conflict Subscale 10.20 1.92 8.00 3.67 1.50 4 5 .21 . Baseline . Follow-up . . . . . M . SD . M . SD . t . df . N . p value . Food Allergy Quality of Life—Parental Burden 3.46 1.23 2.33 1.01 2.45 5 6 .06 Food Allergy Impact Measure 3.90 0.72 3.73 0.28 −0.97 4 5 .64 Food Allergy Self-Efficacy Scale 69.20 19.01 77.72 14.62 0.51 4 5 .39 Food Allergy Knowledge Test 46.20 8.98 49.00 4.95 −1.29 4 5 .27 Perceived Social Support for Caregivers  Social Support Subscale 24.80 10.78 33.00 9.00 −1.20 4 5 .30  Social Conflict Subscale 10.20 1.92 8.00 3.67 1.50 4 5 .21 Open in new tab Mentor Focus Groups Seven mentors participated in a follow-up focus group via teleconference. The following information describes general themes reported by mentors but was not evaluated using a systematic qualitative approach. Mentors all reported having clear expectations about program participation, sufficient and helpful training at the start of the study, and adequate support from the research team throughout. Mentors reported that they would have benefited greatly from a similar program when their children were younger and expressed feeling fulfilled knowing that they were helping a new FA parent, as mentioned below: As I would share my advice, it made me think “Oh wow, I have this together!” It was just sort of reaffirming how far I’ve come… since I was in their shoes. And also, they aren’t giving me advice, but just having a connection with…someone who is going through such very similar things… It made me feel really good. Mentors also noted that completion of the research ethics online modules was time consuming and burdensome and they had difficulty remembering to complete REDCap contact reports. Several mentors experienced difficulty establishing an initial connection with their mentee, which they suggested could be resolved by greater coordination from the research team or through use of teleconferencing. They also emphasized the importance of the research team setting expectations with mentors that different mentees will utilize the program differently (e.g., frequency of contact, mode of contact) based on their individual needs. Mentee Follow-Up Interviews The following information describes general themes reported by mentees but was not evaluated using a systematic qualitative approach. Of the four mentees who completed follow-up interviews, each reported that the most meaningful aspect of their participation was the comfort they experienced in knowing that they had access to an individual who “understood” FA and had been through similar experiences. For example, when asked what the most helpful part of participating in the program was, one mentee explained: [My mentor] helped me avoid some of the pitfalls I could have had. I also think it just helped me just knowing and talking to somebody else who has been through it and who gets it and understands how scary and overwhelming it can be introducing new foods. Just that encouragement … It just helps me feel less anxious. Mentees reported that mentors helped calm fears after diagnosis and provided social and emotional support. Mentees also described a broad range of valuable discussion topics, including navigating medical systems, communicating about FA with family members, introducing new foods, FA management at daycare, and how to balance social participation with safety. They also reported that participation changed their FA management behaviors, as one mentee described: Maybe it is something that would have happened organically … being [child’s] advocate. It was a kick in the butt and it was one that I really needed. Really. After that first meeting with [mentor] I changed and so truly, it was life changing for me. Regarding challenges, mentees noted that baseline and follow-up questionnaires were time consuming and burdensome. They also reported that their ability to meet in-person with their mentor was impacted by their geographic location and childcare availability while their own demanding schedules impacted their ability to communicate with mentors more frequently. Several mentees also mentioned that it would be helpful to meet other mentees in order to learn about others at a similar stage of their FA journey. Discussion FA is increasingly common among young children, and with this increase, a greater number of parents are managing the daily needs of children with FA. Psychosocial interventions targeting parents who are in the newly diagnosed phase, when they must quickly develop competence in allergen avoidance and emergency treatment in order to keep their children safe, are needed (Sugunasingha et al., 2020). This study is one of the first to describe and examine a parent mentoring program for parents of young children newly diagnosed with FA. The sample size for this pilot program was intentionally small in order to examine the feasibility and acceptability of the program and initial trends in changes among psychosocial outcomes of interest prior to implementing a large-scale trial (Leon et al., 2011). Results indicated that it was feasible to recruit and train FA parent mentors, mentors and mentees were able to frequently connect across multiple modes of communication, and the intervention was acceptable to mentees. The baseline questionnaire requirement was a barrier for some potential mentees, but mentees who participated believed that the mentoring they received was relevant to their FA needs, provided FA-related social support, improved their FA knowledge and competence, and positively impacted their FA management. Mentees also showed improvements from baseline to follow-up across several FA psychosocial domains, including FA knowledge, self-efficacy, and quality of life, improved social support, and decreased social conflict. However, these were nonsignificant findings and additional work with a larger sample is needed to fully understand the impact of a parent mentoring intervention on psychosocial functioning. We would hypothesize this program addressed parents’ frequently expressed need for emotional, affirmational, and practical/informational social support (Ireys et al., 2001) and more reliable FA-related advice outside their child’s allergy appointments (Hu et al., 2007). Improvements in social support and FA information may have, in turn, improved parent self-efficacy, which then improved FA-related quality of life (Knibb et al., 2016). These mechanisms warrant further investigation. Mentors also reported a positive experience serving as mentors. They believed the training was important and adequate and they felt supported by the research team. It is important to acknowledge that there were limitations to this study, such as inclusion of mostly affluent Caucasian mentees, a small sample size, and lack of intervention fidelity assessments or a control/comparison group. Qualitative analyses on mentor and mentee feedback were also not conducted in a formalized systematic approach, which may have resulted in missing themes. The study team did not collect data on the recruitment or enrollment rate for mentors and mentees; although this was not a notable area of difficulty for the study more formal data on this would support feasibility findings. Despite these limitations, findings indicate that moving forward with a larger investigation of a parent mentoring program for parents of children with FA is worthwhile. Future Directions and Clinical Implications This pilot study afforded the research team the opportunity to note aspects of the design of this program that worked well, and aspects that warrant modification in a larger scale version; many of these points apply to both the FA population and other chronic illness populations. The mentor training was robust and overall addressed the needs of the mentors. However, although mentors were given contact information for the division’s social worker, mentors wanted more training regarding families with few financial resources. Mentors also noted that they frequently forgot to complete contact reports about their interactions with mentees, suggesting that future iterations will need a better way to assess these interactions. A text notification or more frequent contact with the research team may be needed. It was also difficult to establish an initial in-person meeting between the mentor and mentee. Of note, the intervention portion of this pilot study was conducted prior to the COVID-19 pandemic, when use of teleconferencing platforms was not the norm. Yet, mentor focus groups in April 2020 were conducted via teleconferencing during which mentors said they would be comfortable using this format to connect with mentees. Thus, in the future, teleconferencing may be an additional way to engage and establish rapport if mentors and mentees do not live in similar geographic regions or if childcare is a limiting factor for an in-person meeting. An additional decision point that warrants consideration for future versions of this program and similar programs is how to match mentors and mentees. We attempted to make mentor–mentee matches based on geographic location, rather than specific medical and child demographic parameters, as basic FA management is the same across allergens. During mentor and mentee interviews, they agreed that specific allergen matches did not matter, but they also reported that there may be FA treatment experiences, such as oral food challenges and oral immunotherapy, that would be ideal to match on. Finally, additional research with a larger scale trial and with additional study sites is needed to investigate whether a change in social support, self-efficacy, and FA knowledge is accompanied by changes in specific FA management behaviors and whether or not the findings are similar across geographic regions of the United States. This parent mentoring program is a desired and feasible program on a small scale, but it will be important to consider the feasibility of a fully integrated parent mentoring program for large medical divisions, either within FA clinics or other pediatric chronic illness clinics. Mentoring programs will require significant staff time to recruit, train, and supervise mentors, yet may not generate revenue. Alternatively, a parent mentoring program may be useful as part of a tiered system of psychosocial support for parents of newly diagnosed children with FA or other chronic illnesses. This type of tiered system has been used with other chronic illnesses, such as type 1 diabetes (Hilliard et al., 2017), and may be more realistic for long-term implementation and more sensitive to the range of needs with which families of children with chronic illness present. Conclusions A parent mentoring program for parents of young children newly diagnosed with FA is feasible and acceptable among mentors and mentees, and participation may improve parents’ psychosocial functioning and FA knowledge. Mentors also reported value in participation. Challenges with in-person mentor–mentee meetings may be addressed by embracing teleconferencing platforms. 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TI - The Food Allergy Parent Mentoring Program: A Pilot Intervention
JF - Journal of Pediatric Psychology
DO - 10.1093/jpepsy/jsab019
DA - 2021-03-11
UR - https://www.deepdyve.com/lp/oxford-university-press/the-food-allergy-parent-mentoring-program-a-pilot-intervention-lYkfvsTba3
SP - 1
EP - 1
VL - Advance Article
IS - 
DP - DeepDyve
ER -