Italian Adolescent Young Caregivers of Grandparents: Difficulties Experienced and Support Needed in Intergenerational Care-Giving: Qualitative Findings from a European Union Funded Project

The article aims to describe the experiences of 87 Italian adolescent young caregivers (AYCs) of grandparents (GrPs), with reference to the caregiving stress appraisal model (CSA) that provides a theoretical lens to explore the difficulties encountered and support needed in their caring role. Qualitative data were drawn from an online survey conducted within an EU Horizon 2020 funded project. An inductive thematic analysis was carried out, and the findings were critically interpreted within the conceptual framework of the CSA model. The analysis highlighted three categories of difficulties: material, communication and emotional/psychological. The most common material difficulty was the physical strain associated with moving “uncooperative” disabled older adults. The types of support needed concerned both emotional and material support. The study provides a deeper understanding of the under-studied experiences of AYCs of GrPs. Based on these findings, policies and support measures targeted at AYCs of GrPs should include early needs detection, emotional support and training on intergenerational caring in order to mitigate the stress drivers. Moreover, the study advances the conceptualisation of the CSA model by considering the above-mentioned aspects related to intergenerational caregiving.

Perceptions on Own Aging: Comparisons between Young Adults with and without Caregiving Experience

Although informal caregiving for older adults (OAs) can increase knowledge and awareness about one’s own aging (Pope, 2013), it can also negatively impact caregivers’ physical health and emotional wellbeing (AARP & NAC, 2020) and have spillover effects on school, work, and marriage (Dellmann-Jenkins & Blankemeyer, 2009). Despite the recent trend of family caregiving for OAs by young adults (YAs), research about these young caregivers is scarce. The present study focused on YAs’ perceptions on aging. We hypothesized that YAs who provided at least three months of caregiving tasks for OAs would hold more awareness and negative perceptions on their own aging, as measured by a modified version of the Brief Aging Perceptions Questionnaire (Sexton et al., 2014), compared to those who did not. We recruited 234 YAs between the ages of 18 - 40 (Mage = 29.78, SD, age = 4.83; 59% White; 65.4% male) and had them complete a survey via Amazon Mechanical Turks. About one third (32.1%) had caregiving experience. Results of independent t-tests revealed that caregivers scored higher on awareness of aging [t(229) = 6.950., p < .001, d = .865] and negative consequences/control [t(231) = 6.528., p < .001, d = .927]. Scores of positive consequences/control did not differ between the two groups. Our findings indicate the need for psychological interventions designed to help young caregivers integrate their caregiving experiences with less negative aging perceptions. Future research should examine the direct effects of caregiving experience on perceptions of aging between young and middle-aged adults.

Improving Self-Care of Informal Caregivers of Adults With Frontotemporal Degeneration

Frontotemporal degeneration (FTD) is a common cause of young-onset dementia that results in progressive deterioration in executive functioning and social comportment. A tremendous burden is placed on young caregivers, typically spouses, who often sacrifice their own self-care needs in order to manage the cognitive decline and subsequent functional impairments of their loved one, contributing to extraordinarily high levels of stress and depression in caregivers of individuals with FTD. Very few interventions have been tested specifically in FTD caregivers, and those that exist have generally focused on education around patient behavior management. In this session, we will discuss how we adapted the iCare4Me study, originally designed for heart failure caregivers, for caregivers of persons with FTD and we will share initial findings from iCare4Me for FTD, a randomized controlled trial which evaluates the efficacy of a virtual health coach intervention aimed at increasing self-care behaviors and reducing stress in FTD caregivers.

The experiences of young caregivers of older adults living with complex health Issues

The research regarding the experiences of younger caregivers is limited and this study is an attempt to understand the experiences of young informal caregivers of older adults with complex health issues. Using a grounded theory approach allowed for development of a theory that focused on the process, action, and interactions that shaped the experiences of the participants. Grounded theory research was conducted using one-on-one in-person interviews with two young caregivers to understand how they experienced caregiving for older adults living with complex health issues. This study revealed that these caregivers dealt with the challenges associated with caregiving and sustain themselves in their caregiving role by primarily utilising informal interventions, which were interventions that were outside of healthcare supports. Culture and family dynamics also affected the caregiver experience. This study highlights the need to examine existing caregiver interventions and expand our understanding of how to support caregivers, who are a diverse group with diverse needs. Caregiving is dynamic and is affected by factors outside of caregiving, thus interventions should be flexible and context-led to better meet the needs of caregivers.

The experiences of young caregivers of older adults living with complex health Issues

The research regarding the experiences of younger caregivers is limited and this study is an attempt to understand the experiences of young informal caregivers of older adults with complex health issues. Using a grounded theory approach allowed for development of a theory that focused on the process, action, and interactions that shaped the experiences of the participants. Grounded theory research was conducted using one-on-one in-person interviews with two young caregivers to understand how they experienced caregiving for older adults living with complex health issues. This study revealed that these caregivers dealt with the challenges associated with caregiving and sustain themselves in their caregiving role by primarily utilising informal interventions, which were interventions that were outside of healthcare supports. Culture and family dynamics also affected the caregiver experience. This study highlights the need to examine existing caregiver interventions and expand our understanding of how to support caregivers, who are a diverse group with diverse needs. Caregiving is dynamic and is affected by factors outside of caregiving, thus interventions should be flexible and context-led to better meet the needs of caregivers.

Intergenerational caring: a systematic literature review on young and young adult caregivers of older people

Background The theme of young family caregivers of older relatives is still partially uncovered, although the phenomenon is increasing worldwide. This Systematic Literature Review discusses methodological and content issues of ten articles covering this topic, in order to contribute to increase the knowledge and provide suggestions for designing effective support services for adolescent young caregivers. To this purpose, the findings of this review are framed within the caregiving stress appraisal model (renamed CSA model) elaborated by Yates’ and collegues, in order to highlight differences between young caregivers and the older ones. Methods Multiple databases including PubMed, Web of Science, Scopus, ProQuest - Psychology Database, CINAHL Complete - EBSCOHost were used to carry out a systematic review of the literature. Additional references were retrieved from experts contacted and research knowledge. The selected articles underwent both methodological appraisal and contents analysis: for every article an appraisal score was calculated and themes and sub-themes were identified. Results Out of the ten included studies three were mixed methods, six qualitative and one quantitative. Nine reached a high quality methodological score and one medium. Four main themes emerged from the content analysis: aspects of the caregiving relationship; effects of caregiving; coping strategies; recommendations for services, policy and research. Conclusions Selected studies explored practical features of the relationship between young caregivers and older family members (tasks performed, motivations, coping strategies) and highlighted both positive and negative outcomes on young people’s everyday life condition and future development. Nevertheless, these evidences were often limited to small samples that did not allow to make generalizations. More studies are needed including large samples in order to deepen the different aspects of caregiving and design tailored support services.

Skill, confidence and support: conceptual elements of a child/youth caregiver training program in amyotrophic lateral sclerosis – the YCare protocol

Aim: Pilot study of a novel caregiving training and support intervention for children and youth <19 years, who provide care for person living with amyotrophic lateral sclerosis. Materials & methods: Youth (n = 19) between the ages of 8–19 years, participated in skills training and support program (basic care, feeding/communication, assistive devices and social support). Results: Participants reported significant increase in confidence in tasks, including communication systems and respiratory equipment. Participants identified goal setting and creating behaviors to reach those goals. Benefits of training included that the day changed their perceptions of care and meeting ‘like’ peers. Conclusion: Results of the pilot YCare intervention underscores the need to assess how young caregivers feel and respond to new tasks when receiving support from developmentally similar peers.

Caregiver’s perspectives on facilitators and barriers of active participation in cerebral palsy rehabilitation in North West Nigeria: a qualitative study

Background Cerebral Palsy (CP) refers to the permanent disorders involving postural and movement control as a result of injury to the developing brain. As a result of impairment in postural and movement control, children with CP usually have problems in carrying out activities of daily living (ADL). This makes them dependent on help from their caregivers. Thus, for effective rehabilitation of children with CP, active participation of their caregivers is important. This study seeks to explore the facilitators and barriers of active participation of caregivers in the rehabilitation of children with CP in Kano, Nigeria. Methods The study design used was qualitative in-depth interview. The participants were caregivers of children with CP at Hasiya Bayero Paediatric Specialists Hospital, Kano. The caregivers were interviewed face-to-face, and their responses were audio-recorded with a tape recorder, supplemented with note taking. The data generated was analyzed using constant comparative analysis. Results Forty young caregivers (mean age, 27.17 ± 4.46 years) participated in the study. They expressed encouragement from the therapist managing the child, family support, empathy, improvement in the conditions of other children with CP, cooperation of the child during home programs family support and improvement in the child’s condition as factors that facilitate their active participation in the rehabilitation of the children. However, they mentioned occupation, financial resources and the number of children the caregiver has are the barriers to their active participation in the rehabilitation of the children. Conclusions Both the facilitators and barriers of active participation of caregivers in the rehabilitation of children with CP need to be recognized in order to help caregivers reinforce or overcome them respectively. In addition, economically sustainable and accessible rehabilitation services are needed for all children with CP. Similarly, sharing caregiving rehabilitation tasks amongst family members could facilitate caregiver active participation.

« Nous sommes de jeunes aidants et nous existons » : Un groupe d’aide mutuelle pour faire sortir de l’ombre les jeunes proches aidants

Le rôle de proche aidant que les jeunes sont amenés à occuper auprès de leurs parents passe trop souvent inaperçu, bien que diverses études montrent la présence de cette réalité à un moment ou à un autre de l’adolescence. Cet article présente un groupe d’aide mutuelle au sein de l’organisme Deuil-Jeunesse de Québec (Canada) auprès de jeunes aidants de 12 à 17 ans : les participants assumaient un rôle d’aidant dans un contexte de deuil. La démarche de huit rencontres visait à leur offrir un lieu où échanger, briser l’isolement et démystifier leur rôle. L’entrevue individuelle pré- et post-groupe, le journal de bord de l’intervenante et la grille d’observation des dynamiques d’aide mutuelle ont permis d’évaluer l’intervention. Les résultats mettent en lumière la méconnaissance sociale et individuelle de cette problématique ainsi que les besoins spécifiques des jeunes aidants. Les principaux bénéfices de cette approche sont l’acquisition d’un soutien significatif, le cheminement des jeunes vers la reconnaissance de leur rôle et la réalisation d’un projet artistique visant à sensibiliser la population. Cette étude se penche donc sur les enjeux du travail social de groupe auprès de populations méconnues, la force de l’aide mutuelle, le groupe considéré comme un vecteur de changement et les défis liés au manque d’identification à la situation qui réunit les participants.The caregiving role that young people are sometimes required to undertake with their parents is all too often overlooked, although various studies show the presence of this reality even in adolescence. This article presents a mutual aid group within the ‘Deuil-Jeunesse’ Québec (Canada) organization which deals with 12 to 17 year-olds. As a result, participants undertook their caregiver role in a context of grief. The group of eight meetings is aimed at offering them a place to exchange, break the isolation and demystify their role. The pre- and post-group individual interview, the practitioner’s logbook and observation grid dealing with mutual aid dynamics, made it possible to evaluate the intervention. The results highlight the social and individual misunderstanding of this problem as well as the young caregivers’ specific needs. The acquisition of important support, the journey of young people towards recognition of their role and the realization of an artistic project in order to raise public awareness, constitute the main benefits. Finally, the issues of group intervention with hidden populations, the strength of mutual aid, as well as the group as a vector of change and the challenges related to the lack of identification of the problem that brings them together are discussed.