Profiling young carers' lives: An examination of individual, family, and social contexts

Young carers (YCs) who provide prolonged care for ill, disabled, or addicted family member(s) face a tremendous risk for negative developmental trajectories when remaining hidden (Charles, Stainton, & Marshall, 2009; Charles, 2011; Cass, 2007). Despite a growing recognition of YCs, understanding how providing care impacts a young person is not fully understood. The present study aimed to investigate circumstantial, family, and individual factors which may be associated with YCs’ caregiving role. By comparing YCs to a normative sample, a comprehensive YC profile was formed. A secondary comparative analysis was conducted on 124 YCs (72 females and 52 males, Mage = 12) and a normative sample (n = 124) matched on YCs’ age, gender, and number of siblings within the family. Unique attributes of the YC population were discussed, thereby creating a YC profile. Future research may be able to use this profile to promote identification and recognition of YCs.

Young caregivers in the context of the HIV/AIDS pandemic in sub-Saharan Africa

Against a background of rising adult mortality and morbidity in the context of the HIV/AIDS pandemic in sub-Saharan Africa, this paper provides both quantitative and qualitative evidence for the existence of a largely neglected group of young people with increased responsibility for caregiving. Using questionnaire surveys, focus groups, storyboards and in-depth interviews in three studies across Southern and Eastern Africa some young people in Lesotho, Tanzania and Zimbabwe are found to devote considerable time and energy to caring for sick members of their households. Examination of the tasks carried out by these youngsters finds them to be burdened beyond usual familial and societal expectations of children's 'normal' contributions to the reproduction of households via domestic chores and suchlike. It is concluded that these young people can be described as 'young carers'. The three studies are presented to illuminate different sociospatial aspects of caregiving by young people. First, using qualitative data from Lesotho the range of caring tasks young caregivers; perform for care recipients - usually a grandmother, parent, or sibling - is identified. Second, the impact caregiving responsibilities have on children's primary school attendance is examined using survey data from Tanzania. Third, the wider negative and positive impacts of caregiving including loss of friends and gaining of emotional maturity for young carers and their households is explored with in-depth individual interviews from Zimbabwe. Finally, suggestions are made for further research to deepen understanding of the geographies of caring within the context of the population geographies of the HIV/AIDS pandemic in sub-Saharan Africa and beyond. Copyright (c) 2006 John Wiley & Sons, Ltd.

«Grandir comme aidant» : pour mieux comprendre la réalité des adolescents qui sont des aidants naturels auprès d'un parent dépendant.

La présente recherche s’intéresse aux adolescents qui sont des aidants naturels auprès d’un parent aux prises avec une maladie chronique dans un contexte où, d’une part, de plus en plus de soins doivent désormais être assumés par les personnes atteintes elles-mêmes et par leurs familles (Guberman et coll., 2005) et, d’autre part, les services destinés aux aidants naturels ont encore de la difficulté à concevoir les enfants et les adolescents comme étant des aidants (Charles, Stainton et Marshall, 2012). Les jeunes aidants adoptent des tâches et des rôles qui ne sont pas toujours adaptés à leur âge (Earley et Cushway, 2002), ce qui peut compromettre leur développement psycho-social (Sieh et coll., 2010 ; Davey et coll., 2005 ; Pedersen et Revenson, 2005). En parlant des jeunes aidants, il est important de considérer le caregiving sur un continuum selon lequel tous les jeunes sont impliqués, d’une façon ou d’une autre, dans les aspects de la prise en charge d’un parent malade, mais qu’une proportion plus petite adopte un rôle de jeune aidant, ce qui signifie que leur implication est exagérée, que le temps consacré à l’aide ainsi que la nature de celle-ci ne correspondent pas à leur âge ni à leur stade de développement, et qu’il y a des restrictions importantes ayant des impacts négatifs sur leur vie (Becker, 2007). Notre recherche part ainsi de l’interrogation sur la façon dont cette réalité est vécue par les adolescents et dont elle est perçue et interprétée par les intervenants de différents milieux de pratique dans le contexte québécois. Cette recherche s’appuie sur le cadre théorique de la reconnaissance tel que proposé par Honneth. En effet, en nous appuyant sur la littérature disponible, on peut présumer que l’attention portée aux jeunes aidants est un enjeu central de leur réalité. En conséquence, il est de notre avis qu’il faut mieux comprendre les enjeux de cette reconnaissance dont la plupart des recherches parlent, mais qui restent peu étudiés en lien avec les jeunes aidants. Ce cadre conceptuel servira de porte d’entrée pour analyser quatre entrevues semi-dirigées avec des adolescents âgés de 15 à 19 ans, ainsi que sept entrevues semi-dirigées avec des intervenants de divers milieux de pratique. Les résultats de cette recherche suggèrent la présence de trois dynamiques de reconnaissance décrivant des enjeux différents entourant la réalité des jeunes aidants. Celles-ci mettent en évidence que les conséquences auxquelles les jeunes aidants peuvent être confrontés proviennent moins de leur rôle d’aidant que de la dimension relationnelle en ce qui concerne leur réalité. En outre, au croisement des regards entre les adolescents et les intervenants, un point de divergence se dégage et semble faire obstacle à notre manière de considérer l’aide qui devrait être apportée en ce qui concerne ce phénomène. Il apparaît que, pour les intervenants, l’amélioration de la situation des jeunes aidants passe, entre autres, par le soutien qui devrait être apporté aux parents, tandis que les adolescents mettent un accent particulier sur la manière dont leur contribution est non seulement valorisée dans la sphère familiale, mais également soutenue par les intervenants entourant leur famille.

Defining children's rights to work and care in Sub-Saharan Africa: tensions and challenges in policy and practice

This chapter explores the spatialities of children's rights through a focus on how children's paid and unpaid work in Sub-Saharan Africa intersects with wider debates about child labor, child domestic work and young caregiving. Several tensions surround the universalist and individualistic nature of the rights discourse in the context of Sub-Saharan Africa and policymakers, practitioners, children and community members have emphasized children's responsibilities to their families and communities, as well as their rights. The limitations of ILO definitions of child labor and child domestic work and UNCRC concerns about 'hazardous' and 'harmful' work are highlighted through examining the situation of children providing unpaid domestic and care support to family members in the private space of their own or a relative's home. Differing perspectives towards young caregiving have been adopted to date by policymakers and practitioners in East Africa, ranging from a child labor/ child protection/ abolitionist approach, to a 'young carers'/ child-centered rights perspective. These differing perspectives influence the level and nature of support and resources that children involved in care work may be able to access. A contextual, multi-sectorial approach to young caregiving is needed that seeks to understand children's, family members' and community members' perceptions of what constitutes inappropriate caring responsibilities within particular cultural contexts and how these should best be alleviated.

Investigation of the Impacts of Parental Chronic Illness on Youth Caregiving Experiences and Psychosocial Adjustment.

Objective: Parental chronic illness has an impact on several aspects of offspring’s life. Three major impediments to research progress in this field are undeveloped and untested theoretical frameworks, no clear conceptualization of youth caregiving, and no available instrument to assess such construct in Italian. To address these weaknesses, the aims of this PhD dissertation were: (1) to investigate the psychometric properties of the Italian version of the Young Caregiver of Parents Inventory-Revised (YCOPI-R); (2) to empirically examine a model of the effects of parental illness on youth and family functioning innovatively analyzing the role of psychological flexibility; (3) to test a refined conceptualization of youth caregiving. Methods: A total of 501 adolescents aged 11 to 24 (295 young caregivers and 206 young noncaregivers) completed a questionnaire regarding youth caregiving, parental illness, and youth adjustment. In the first study, young caregivers were compared to noncaregivers, while the other studies used only the young carers subgroup. Results: The first study indicated that the Italian version of the YCOPI-R demonstrated sound psychometric and was able to discriminate between young caregivers and noncaregivers. The second study underlined the key protective role of psychological flexibility in shaping youth adjustment and family functioning in the context of parental illness. The third study innovatively clarified the nature of youth caregiving, indicating that it is a tripartite construct related to both positive and negative youth adjustment outcomes. Conclusions. This PhD project drew attention towards youth of chronically ill parents, a segment of the young population which is presently almost completely neglected in Italy by health policies and healthcare providers. This PhD project ultimately shed light into the processes through which parental illness results in detrimental youth outcomes and highlighted avenues for interventions that target empirically supported mechanisms which ameliorate the detrimental effects of parental illness on youth.

Youth psychosocial adjustment in the context of parental illness: risk and protective factors

Young carers might experience both psychological distress and positive changes from living with their chronically ill parent. However, little is known about why some young carers do well with their situation and experience positive outcomes, whereas others do not. In this regard, this dissertation aims to investigate how parental chronic illness affects young carers’ psychosocial adjustment through risk (i.e., unmet needs) and protective factors (i.e., benefit finding, emotion regulation). This main goal has been addressed by conducting three studies presented in Chapters 2–4. Chapter 2 has examined the mediating role of unmet needs on the relationship between illness unpredictability and youth psychosocial adjustment (i.e., quality of life and internalizing problems). In this regard, it has been found that levels of unmet needs significantly mediated the relationship between illness unpredictability and offspring health-related quality of life. In the systematic review with meta-analysis presented within Chapter 3, it has been sought to investigate the mediating role of the protective factors (i.e., benefit finding and emotion regulation) in the relationship between caregiving components and youth psychosocial adjustment in young carers. This study has shown the significant associations between caregiving components and psychosocial adjustment in young carers not only directly, but also indirectly through protective factors. Finally, to expand on previous findings, a qualitative study in Chapter 4 has examined the unique experiences of young carers, as well as the effects of the COVID-19 global pandemic. This study has yielded a deeper understanding of how protective factors may be operated during young carers’ lived experiences before and during the COVID-19 global pandemic. Overall, this dissertation has shed light on the pivotal role played by risk and protective factors in caregiving components that serve as key determinants that can enhance positive psychosocial outcomes as well as concurrently mitigate adverse psychosocial consequences among young carers.

Does a structured gardening programme improve well-being In young-onset dementia? A preliminary study

Introduction: Young onset dementia (YOD) affects about 1 in 1500 people aged under 65 years in the UK. It is associated with loss of employment, independence and an increase in psychological distress. This project set out to identify the benefits of a 2 hour week) structured activity programme of gardening for people with YOD. Method: A mixed qualitative quantitative study of therapeutic gardening for people with YOD, measuring outcomes for both participants with YOD and their carers. 12 participants were recruited from a county wide older adults mental health service, based on onset of dementia being before 65 years of age(range 43-65 years). 2 dropped out and 1 died during the project. Measures included the Mini Mental State Examination, Bradford Well Being Profile, Large Allen Cognitive Level Screen and Pool Activity Level. Results: Over a one year period the carers of the people with YOD found that the project had given participants a renewed sense of purpose and increased well-being. while cognitive functioning declined. Conclusions: This study suggests that a meaningful guided activity programme can maintain or improve well-being in the presence of cognitive deterioration.

How young people from culturally and linguistically diverse backgrounds experience mental health: Some insights for mental health nurses

This article reports on part of a study that looked at the mental health of culturally and linguistically diverse (CALD) young people. The research sought to learn from CALD young people, carers, and service providers experiences relevant to the mental health of this group of young people. The ultimate goal was to gain insights that would inform government policy, service providers, ethnic communities and most importantly the young people themselves. To this end, qualitative interviews were undertaken with 123 CALD young people, 41 carers and 14 mental health service providers in Queensland, Western Australia and South Australia. Only one aspect of the study will be dealt with here, namely the views of the young CALD participants, which included risk factors, coping strategies and recommendations about how they could be supported in their struggle to maintain mental health. One of the most important findings of the study relates to the resilience of these young people and an insight into the strategies that they used to cope. The efforts of these young people to assist us in our attempts to understand their situation deserve to be rewarded by improvements in the care that we provide. To this end this article sets out to inform mental health nurses of the results of the study so that they will be in a position to better understand the needs and strengths of their CALD clients and be in a better position to work effectively with them.

The psychosocial impact of caregiving on young people who have a parent with an illness or disability: Comparisons between young caregivers and noncaregivers

Objective: To investigate the psychosocial impact of young caregiving by empirically validating prominent qualitative themes.. This was achieved through developing an inventory called the Young Caregiver of Parents Inventory (YCOPI) designed to assess these themes and by comparing young caregivers and noncaregivers. Method: Two hundred forty-five participants between 10 and 25 years completed questionnaires: 100 young caregivers and 145 noncaregivers. In addition to the YCOPI, the following variables were measured: demographics, caregiving context, social support, appraisal, coping strategies, and adjustment (health, life satisfaction, distress, positive affect). Results: Eight reliable factors emerged from the YCOPI that described the diverse impacts of caregiving and reflected the key themes reported in prior research. The factors were related to most caregiving context variables and theoretically relevant stress and coping variables. Compared with noncaregivers, young caregivers reported higher levels of young caregiving impact, less reliance on problem-solving coping, and higher somatization and lower life satisfaction. Conclusions: Findings delineate key impacts of young caregiving and highlight the importance of ensuring that measures used in research on young caregivers are sensitive to issues pertinent to this population.

Patient/carers' recollection of medicines related information from an out-patient clinic appointment

AIM: To identify what medicines related information children/young people or their parents/carers are able to recall following an out-patient clinic appointment. METHOD: A convenience sample of patients' prescribed at least one new long-term (>6 weeks) medicine were recruited from a single UK paediatric hospital out-patient pharmacy. A face-to-face semi-structured questionnaire was administered to participants when they presented with their prescription. The questionnaire included the following themes: names of the medicines, therapeutic indication, dose regimen, duration of treatment and adverse effects.The results were analysed using Microsoft Excel 2013. RESULTS: One hundred participants consented and were included in the study. One hundred and forty-five medicines were prescribed in total. Participants were able to recall the names of 96 (66%) medicines and were aware of the therapeutic indication for 142 (97.9%) medicines. The dose regimen was accurately described for 120 (82.8%) medicines with the duration of treatment known for 132 (91%). Participants mentioned that they had been advised about side effects for 44 (30.3%) medicines. Specific counselling points recommended by the BNFc1, were either omitted or not recalled by participants for the following systemic treatments: cetirizine (1), chlorphenamine (1), desmopressin (2), hydroxyzine (2), itraconazole (1), piroxicam (2), methotrexate (1), stiripentol (1) and topiramate (1). CONCLUSION: Following an out-patient consultation, where a new medicine is prescribed, children and their parents/carers are usually able to recall the indication, dose regimen and duration of treatment. Few were able to recall, or were told about, possible adverse effects. This may include some important drug specific effects that require vigilance during treatment.Patients, along with families and carers, should be involved in the decision to prescribe a medicine.2 This includes a discussion about the benefits of the medicine on the patient's condition and possible adverse effects.2 Treatment side effects have been shown to be a factor in treatment non-adherence in paediatric long-term medical conditions.3 Practitioners should explain to patients, and their family members or carers where appropriate, how to identify and report medicines-related patient safety incidents.4 However, this study suggests that medical staff may not be comfortable discussing the adverse effects of medicines with patients or their parents/carers.Further research in to the shared decision making process in the paediatric out-patient clinic when a new long-term medicine is prescribed is required to further support medicines adherence and the patient safety agenda.

Comparing long-term placements for young children in care: Does type of placement really matter?

This paper presents findings from the third phase of a longitudinal study, entitled Care Pathways and Outcomes, which has been tracking the placements and measuring outcomes for a population of children (n = 374) who were under the age of five and in care in Northern Ireland on the 31st March 2000. It explores how a sub-sample of these children at age nine to 14 years old were getting on in the placements provided for them, in comparative terms across five placement types: adoption; foster care; kinship foster care (with relatives); on Residence Order; and living with birth parents. This specifically focused on the development of attachment and self-concept from the perspective of the children, and behavioural and emotional function, and parenting stress, from the perspective of parents and carers. Findings showed no significant placement effect from the perspective of children, and a statistically weak, but descriptively compelling, effect from the perspective of parents. The findings challenge the notion of adoption as the gold standard in long-term placements, specifically from the perspective of children in terms of their parent/carer attachments and self-concept, and highlight what appears to be the central importance of placement longevity for delivering positive longer-term outcomes for these children, irrespective of placement type.

Layers of Listening: Qualitative Analysis of the Impact of Early Intervention Services for First-episode Psychosis on Carers' Experiences

Background Early intervention services (EIS) comprise low-stigma, youth-friendly mental health teams for young people undergoing first-episode psychosis (FEP). Engaging with the family of the young person is central to EIS policy and practice. Aims By analysing carers' accounts of their daily lives and affective challenges during a relative's FEP against the background of wider research into EIS, this paper explores relationships between carers' experiences and EIS. Method Semi-structured longitudinal interviews with 80 carers of young people with FEP treated through English EIS. Results Our data suggest that EIS successfully aid carers to support their relatives, particularly through the provision of knowledge about psychosis and medications. However, paradoxical ramifications of these user-focused engagements also emerge; they risk leaving carers' emotions unacknowledged and compounding an existing lack of help-seeking. Conclusions By focusing on EIS's engagements with carers, this paper draws attention to an urgent broader question: as a continuing emphasis on care outside the clinic space places family members at the heart of the care of those with severe mental illness, we ask: who can, and should, support carers, and in what ways?

A systematic review on the factors associated with positive experiences in carers of someone with cancer.

The aim of this review was to identify the factors associated with positive experiences in non-professional carers of someone with a cancer diagnosis. A systematic search of the following electronic databases was undertaken: Cochrane Library, CINAHL, PsycINFO, SocINDEX and Medline. Literature was searched using terms relating to cancer, caring and positive experiences. Additional records were identified through a manual search of relevant reference lists. The search included studies published in English from 1990- June 2015. Two raters were involved in data extraction, quality appraisal, coding, synthesis, and analysis. Evolutionary concept analysis was used as a guiding framework in order to focus on attributes associated with positive experiences. Fifty two articles were included in this review. Analysis identified four overarching attributes: ‘gender’, ‘personal resources’, ‘finding meaning’ and ‘social context’. Despite the challenges associated with caring this combination of internal and external factors enabled some carers to report positive experiences related to caring. This knowledge may be clinically helpful when designing supportive interventions. Strengths and limitations of these claims are discussed.