Dataset Information

APPEAL-2: A pan-European qualitative study to explore the burden of peanut-allergic children, teenagers and their caregivers.

ABSTRACT:

Background

Allergy to Peanuts ImPacting Emotions And Life (APPEAL-1) was a recent European multi-country questionnaire survey that highlighted the negative impacts of peanut allergy (PA) on quality of life. A follow-on qualitative study, APPEAL-2, further assessed the burden of PA and associated coping strategies through semi-structured interviews.

Objective

To gain qualitative insight on the strategies used to cope with and manage PA and the impact of these strategies on the quality of life of children, teenagers and caregivers.

Methods

This cross-sectional qualitative study was conducted in eight European countries: the United Kingdom, France, Germany, Ireland, Spain, Italy, Denmark and the Netherlands. Semi-structured interviews were conducted with children (aged 8-12 years) and teenagers (aged 13-17 years) with self-/proxy-reported moderate or severe PA and with parents/caregivers of children or teenagers (aged 4-17 years) with moderate or severe PA. Data were analysed using thematic analysis; data saturation was assessed. Two conceptual models were developed to illustrate the impacts of PA and coping strategies used to manage them for (a) individuals with PA and (b) parents/caregivers of children with PA.

Results

107 participants were interviewed: 24 children, 39 teenagers and 44 caregivers. The conceptual models illustrated themes related to coping and control, driven by the fear of PA reactions, and the associated emotional, social, relationship and work impacts. Factors moderating these impacts included social attitudes and support, child-caregiver relationship and coping strategies used.

Conclusions and clinical relevance

The APPEAL-2 results substantiate the findings of APPEAL-1; the results also suggest that the severity of experience with PA may not correlate with perception of its overall burden and show variable impacts by country.

SUBMITTER: DunnGalvin A

PROVIDER: S-EPMC7780296 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

APPEAL-2: A pan-European qualitative study to explore the burden of peanut-allergic children, teenagers and their caregivers.

DunnGalvin Audrey A Gallop Katy K Acaster Sarah S Timmermans Frans F Regent Lynne L Schnadt Sabine S Podestà Marcia M Sánchez Angel A Ryan Robert R Couratier Pascale P Feeney Mary M Hjorth Betina B Fisher Helen R HR Blumchen Katharina K Vereda Andrea A Fernández-Rivas Montserrat M

Clinical and experimental allergy : journal of the British Society for Allergy and Clinical Immunology 20200915 11

<h4>Background</h4>Allergy to Peanuts ImPacting Emotions And Life (APPEAL-1) was a recent European multi-country questionnaire survey that highlighted the negative impacts of peanut allergy (PA) on quality of life. A follow-on qualitative study, APPEAL-2, further assessed the burden of PA and associated coping strategies through semi-structured interviews.<h4>Objective</h4>To gain qualitative insight on the strategies used to cope with and manage PA and the impact of these strategies on the qual ...[more]

PMID: 32757478

Similar Datasets

Project description:BackgroundPeanut allergy (PA) is a common, potentially life-threatening and typically lifelong condition with a significant burden of illness. However, information is lacking on how persons with PA (PwPA) and their caregivers perceive the psychosocial impact of living with PA. The Allergy to Peanuts imPacting Emotions And Life 1 (APPEAL-1) survey, conducted across Europe, investigated the experience and impact of living with PA. Here, we report data evaluating the psychosocial impact of PA on PwPA and their caregivers.MethodsAllergy to Peanuts imPacting Emotions And Life study 1 was an online survey conducted in eight European countries. Representatives of eight patient advocacy groups and five healthcare-research specialists developed the survey. Eligible respondent groups included the following: adults diagnosed with PA (self-report); parent/nonparent caregivers (proxy-report for a child with PA); and parent/nonparent caregivers (self-report of PA impact on themselves).ResultsOf 1846 total study respondents, 419 were adults with PA (self-report); 546 were parents/caregivers (proxy-report); and 881 were parents/caregivers (self-report). Most respondents reported lifestyle restrictions regarding food (84%-93%) and additional domains including parties and socializing, holiday activities and destinations, and taking public transport (53%-89%). Approximately 40% rated themselves as "very" frustrated and "very" stressed. Two-thirds (65%) felt socially isolated; 43% were bullied. Less than half felt confident in knowing when to use an adrenaline autoinjector. Several intercountry differences were observed such as high levels of uncertainty and stress in respondents from Ireland, highest rates of anxiety in respondents from Germany, and social exclusion and isolation most common in respondents from France.ConclusionsPeanut allergy imposes an adverse psychosocial impact on patients and caregivers, leading to frustration, stress and isolation. Attention to the impact of PA is needed in research and clinical practice to improve PA healthcare and public education programmes.

Project description:ObjectiveThe number of patients with end-stage kidney disease (ESKD) requiring renal replacement therapy in Sri Lanka is significantly rising. Most of these patients depend on haemodialysis, carrying a significant burden on their family caregivers. To develop care and support for both the patient and their family caregiver, it is crucial to understand how caregivers experience their caregiving situation. Therefore, this study aimed to explore family caregivers' experiences of burden and coping when caring for a family member receiving haemodialysis in the Sri Lankan context.DesignQualitative study with an exploratory design.SettingFamily caregivers were recruited at a haemodialysis unit of a main government sector hospital in Sri Lanka between October and November 2021.ParticipantsA purposive sampling of 11 family caregivers who cared for a family member receiving haemodialysis in a main government teaching hospital in Sri Lanka for at least 3 consecutive months. Data were collected through individual semistructured telephone interviews and analysed using qualitative content analysis.ResultsThe results showed an overarching theme, 'striving to hold on and not let go', with four categories: (1) feeling exhausted by the care burden, (2) feeling burdened as failing the care responsibility, (3) striving to cope and find meaning in caregiving, and (4) coping with caregiving through others' support.ConclusionThe results show that the family caregivers have a multifaceted burden. They continued caring for their family member receiving haemodialysis while making adjustments to the burdensome caregiving situation despite many constraints and suffering. Psychosocial support and financial assistance, including family counselling, are needed by family caregivers, through a community support system, to ensure endurance during their family members' illness trajectory. Advance care planning is vital to alleviate care uncertainty and to meet the care needs of patients with ESKD, particularly in resource-constrained settings.

Dataset Information

APPEAL-2: A pan-European qualitative study to explore the burden of peanut-allergic children, teenagers and their caregivers.

Background

Objective

Methods

Results

Conclusions and clinical relevance

Publications

APPEAL-2: A pan-European qualitative study to explore the burden of peanut-allergic children, teenagers and their caregivers.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets