Young caregivers in the end-of-life setting: a population-based profile of an emerging group.

PURPOSE: Little is known about young caregivers of people with advanced life-limiting illness. Better understanding of the needs and characteristics of these young caregivers can inform development of palliative care and other support services. METHODS: A population-based analysis of caregivers was performed from piloted questions included in the 2001-2007 face-to-face annual health surveys of 23,706 South Australians on the death of a loved one, caregiving provided, and characteristics of the deceased individual and caregiver. The survey was representative of the population by age, gender, and region of residence. FINDINGS: Most active care was provided by older, close family members, but large numbers of young people (ages 15-29) also provided assistance to individuals with advanced life-limiting illness. They comprised 14.4% of those undertaking "hands-on" care on a daily or intermittent basis, whom we grouped together as active caregivers. Almost as many young males as females participate in active caregiving (men represent 46%); most provide care while being employed, including 38% who work full-time. Over half of those engaged in hands-on care indicated the experience to be worse or much worse than expected, with young people more frequently reporting dissatisfaction thereof. Young caregivers also exhibited an increased perception of the need for assistance with grief. CONCLUSION: Young people can be integral to end-of-life care, and represent a significant cohort of active caregivers with unique needs and experiences. They may have a more negative experience as caregivers, and increased needs for grief counseling services compared to other age cohorts of caregivers.

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.

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.

Confirmatory factor analysis and invariance testing of the Young Carer of Parents Inventory (YCOPI)

Objective Research into youth caregiving in families where a parent experiences a significant medical condition has been hampered by a lack of contextually sensitive measures of the nature and breadth of young caregiving experiences. This study examined the factor structure and measurement invariance of such a measure called the Young Carer of Parents Inventory (YCOPI; Pakenham et al., 2006) using confirmatory factor analysis across 3 groups of youth. The YCOPI has 2 parts: YCOPI-A with 5 factors assessing caregiving experiences that are applicable to all caregiving contexts; YCOPI-B with 4 factors that tap dimensions related to youth caregiving in the context of parent illness. Design Two samples (ages 9–20 years) were recruited: a community sample of 2,429 youth from which 2 groups were derived (“healthy” family [HF], n = 1760; parental illness [PI], n = 446), and a sample of 130 youth of a parent with multiple sclerosis). Results With some modification, the YCOPI-A demonstrated a replicable factor structure across 3 groups, and exhibited only partial measurement invariance across the HF and PI groups. The impact of assuming full measurement invariance on latent mean differences appeared small, supporting use of the measure in research and applied settings when estimated using latent factors and controlling for measurement invariance. PI youth reported significantly higher scores than did HF youth on all YCOPI-A subscales. The YCOPI-B requires some modifications, and further development work is recommended. Conclusion The factor structure that emerged and the addition of new items constitutes the YCOPI-Revised. Findings support the use of the YCOPI-Revised in research and applied settings.

«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.

Developing guidelines for intervention to reduce risk of low-speed vehicle run-overs of young children

In Australia, research suggests that up to one quarter of child pedestrian hospitalisations result from driveway run-over incidents (Pinkney et al., 2006). In Queensland, these numbers equate to an average of four child fatalities and 81 children presenting at hospital emergency departments every year (The Commission for Children, Young People and Child Guardian). National comparison shows that these numbers represent a slightly higher per capita rate (23.5% of all deaths). To address this issue, the current research was undertaken with the aim to develop an educative intervention based on data collected from parents and caregivers of young children. Thus, the current project did not seek to use available intervention or educational material, but to develop a new evidence-based intervention specifically targeting driveway run-overs involving young children. To this end, general behavioural and environmental changes that caregivers had undertaken in order to reduce the risk of injury to any child in their care were investigated. Broadly, the first part of this report sought to: • develop a conceptual model of established domestic safety behaviours, and to investigate whether this model could be successfully applied to the driveway setting; • explore and compare sources of knowledge regarding domestic and driveway child safety; and • examine the theoretical implications of current domestic and driveway related behaviour and knowledge among caregivers. The aim of the second part of this research was to develop and test the efficacy of an intervention based on the findings in the first part of the research project. Specifically, it sought to: • develop an educational driveway intervention that is based on current safety behaviours in the domestic setting and informed by existing knowledge of driveway safety and behaviour change theory; and • evaluate its efficacy in a sample of parents and caregivers.

Prevalence and predictors of HIV-related stigma among institutional- and community-based caregivers of orphans and vulnerable children living in five less-wealthy countries.

BACKGROUND: In the face of the HIV/AIDS epidemic that has contributed to the dramatic increase in orphans and abandoned children (OAC) worldwide, caregiver attitudes about HIV, and HIV-related stigma, are two attributes that may affect caregiving. Little research has considered the relationship between caregiver attributes and caregiver-reported HIV-related stigma. In light of the paucity of this literature, this paper will describe HIV-related stigma among caregivers of OAC in five less wealthy nations. METHODS: Baseline data were collected between May 2006 through February 2008. The sample included 1,480 community-based and 192 institution-based caregivers. Characteristics of the community-based and institution-based caregivers are described using means and standard deviations for continuous variables or counts and percentages for categorical variables. We fit logistic regression models, both for the full sample and separately for community-based and institution-based caregivers, to explore predictors of acceptance of HIV. RESULTS: Approximately 80% of both community-based and institution-based caregivers were female; and 84% of institution-based caregivers, compared to 66% of community-based caregivers, said that they would be willing to care for a relative with HIV. Similar proportions were reported when caregivers were asked if they were willing to let their child play with an HIV-infected child. In a multivariable model predicting willingness to care for an HIV-infected relative, adjusted for site fixed effects, being an institution-based caregiver was associated with greater willingness (less stigma) than community-based caregivers. Decreased willingness was reported by older respondents, while willingness increased with greater formal education. In the adjusted models predicting willingness to allow one's child to play with an HIV-infected child, female gender and older age was associated with less willingness. However, willingness was positively associated with years of formal education. CONCLUSIONS: The caregiver-child relationship is central to a child's development. OAC already face stigma as a result of their orphaned or abandoned status; the addition of HIV-related stigma represents a double burden for these children. Further research on the prevalence of HIV-related acceptance and stigma among caregivers and implications of such stigma for child development will be critical as the policy community responds to the global HIV/AIDS orphan crisis.

Service Provision for Children and Young People with Acquired Brain Injury; Practice Recommendations: – International Paediatric Brain Injury Society (IPBIS).

Background: Providing appropriate rehabilitation services for Acquired Brain Injury (ABI) in childhood presents a number of challenges for caregivers, health and education professionals and the young person as they develop.
Primary Objective: To record the challenges and possible creative solutions generated by an international group of professionals to address the needs of children with ABI.
Review of Information: Recommendations were generated from children’s special interest group meetings of the International Brain Injury Association (Turin Italy, 2001, Stockholm Sweden, 2003, Melbourne Australia, 2005, Lisbon Portugal, 2008) and through meetings of the International Paediatric Brain Injury Society (IPBIS), formed in 2009. Delegates participating in the workshops were representative of nations from around the world and included The Netherlands, New Zealand, Australia, UK, Finland, Germany, South Africa, USA, Canada, Sweden, Brazil and Italy.
Outcomes: The information presented is based on a retrospective review of those meetings and the summaries of the topics considered.

Children as caregivers

Caregiving is usually associated with adults’ responsibilities. Official statistics and research have demonstrated, however, that many children and young people in the global North and South have substantial, regular caring responsibilities for family members with chronic illnesses, impairments or other care needs. This chapter conceptualises children’s roles as ‘caregivers’ and the care work they do. It then analyses the available evidence on outcomes of children’s caregiving and the factors and processes influencing their involvement. While research reveals that caregiving may have positive as well as negative outcomes for children’s well-being, formal and informal safety nets are needed, especially in resource-limited settings, to alleviate children’s care work. Children’s and families’ experiences suggest that social protection measures and support for those being cared for as well as those providing care would help to ensure that caregiving does not have long-term negative impacts on children’s personal development, education, health, family relations, peer interactions, social participation, employment opportunities and socially expected transitions to adulthood.

Identifying Areas of Needed Support for Young Girls with Central Precocious Puberty (CPP)

Thesis (Master's)--University of Washington, 2016-06

Life Experiences of Youth Who Were Born with HIV Infection in Puerto Rico: The Voices of Young Survivors

The effectiveness of antiretroviral therapy (ART) transformed the pediatric HIV epidemic. The disease changed significantly over the course of three decades: while early in the epidemic it was almost always fatal, it has become a chronic condition. This study examined how perinatally-infected youth experience the impact of HIV in their lives. A qualitative study using interpretative phenomenological analysis (IPA) was conducted. Twenty in-depth interviews were carried out among 12 women and 8 men aged 18 to 30 years in Puerto Rico. These were conducted in Spanish, audio-recorded, transcribed and translated into English. While narrating their experiences, participants were interpreting what the situation meant to them and how they make sense of it. Three topics emerged: (1) perception and response to treatment and illness, particularly their lived experiences with ART; (2) disclosure experiences; and (3) family matters. Most participants challenged their therapy, in most cases to force their caregivers to disclose their status. Problems with adherence were attributed to busy schedules or forgetfulness. Participants experienced the disfiguring adverse effects of ART, which they endured for years without being informed that ART was the cause of these. Participants’ experiences with disclosure demonstrated the importance of validating them as individuals capable of managing their health. The paternalistic approach of withholding their diagnosis to spare them suffering resulted in increased anxiety. Participants acknowledged the difficulties of revealing their HIV status to their partners. They referred to family and friends as essential in coping with HIV. However, some encountered discrimination and stigma within their families. Participants who had suffered the loss of their parents found other parental figures such as adoptive parents or other family members. Most participants expressed a desire to have children. Perinatally HIV-infected youth will require health services for the rest of their lives. The adult health care into which they transition should consider their needs and journey. Services should consider including family members. This study underscores the need for improved access to mental health services. It is also essential to transcend medical treatment and develop a broader perspective of health care. Health care services should include reproductive decision-making counselling services.

Non-communicable diseases among children in Ghana: health and social concerns of parent/caregivers.

Background: Globally, there is a progressive rise in the burden of non-communicable diseases (NCDs). This paper examined the health and social concerns of parents/caregivers on in-patient care for children with NCDs in Ghana. Methods: This was a cross-sectional study in three large health facilities in Ghana (the largest in the South, the largest in the North and the largest in the Eastern part of Ghana. Data was collected with a structured questionnaire among 225 caregivers (≥18 years) of 149 children with NCDs in health facilities in the three regions. Data was analyzed with simple descriptive statistics. Results: Most caregivers 169(75.0%) were women, relatively young (median age 35years), mostly married and resided in urban areas. Sickle cell disease was the commonest NCD among the children. All 169(75.0%) caregivers believed children suffer NCDs because of sins of parents/ancestors, 29(12.9%) believed herbalists/spiritualists have insights into treating NCDs and 73(32.6%) have previously used herbs/traditional medicine for child's illness. NCD in children was a burden and caused financial difficulties for families. Most caregivers (>96.0%) indicated NCDs in children should be included in national health insurance benefits package and a comprehensive national NCD policy is needed. Conclusion: Absence of national NCD policy for children is a major challenge. The burden of care rests mainly on the parents/ caregivers. A national strategic intervention on the importance of awareness generation on the causes, risk factors, prevention and treatment of NCDs for families and communities is essential. Government support through national health and social policy initiatives are essential.