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Effects of Parental Physical and Mental Illness on Children and Adolescents

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A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601). This special issue belongs to the section "Children's Health".

Deadline for manuscript submissions: closed (20 January 2023) | Viewed by 30713

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Special Issue Editors

Prof. Dr. Kenneth Pakenham

*
E-Mail Website
Guest Editor

School of Psychology, The University of Queensland, Brisbane, QLD 4072, Australia
Interests: chronic illness; caregiving; resilience; acceptance and commitment therapy; mental health promotion
* Emeritus Professor of Clinical and Health Psychology

Dr. Giulia Landi

E-Mail Website
Guest Editor

Department of Psychology “Renzo Canestrari”, University of Bologna, 40127 Bologna, Italy
Interests: chronic illness; caregiving; psychological flexibility; mental health promotion; health psychology

Special Issue Information

Dear Colleagues,

The welfare of children and adolescents growing up in the context of parental physical and mental illness is an emerging global public health concern exacerbated by a rise in mental health problems among youth internationally. There is an increase worldwide in the number of youths affected by parental illness due to a range of factors, including the rise in pandemics, advances in medical technologies enabling more parents to live longer with serious illnesses, and parents conceiving children at an older age, which in turn, is associated with an increased vulnerability to health problems. Children and adolescents of parents with serious mental and physical illnesses are at increased risk of significant social, educational, employment and mental and physical health problems, which can adversely affect quality of life and progression through developmental milestones across the lifespan. These youth tend to assume relatively high levels of caregiving responsibilities associated with the redistribution of family roles that often occurs in the context of parental illness. For this reason, these children are sometimes referred to as ‘young carers.’

The contribution of carers to the health care workforce is critical to the sustainability of health and community care systems worldwide. Young carers are a vital, but hidden and neglected carer group. The impacts of parental illness and associated youth caregiving interact with various systems at the individual, family, community, and societal levels. Although most research has focused on the adverse impacts, recent evidence suggests these youth can also experience personal benefits and grow in resilience related to the inherent challenges of parental illness.

The impacts of parental illness on youth are complex and need further investigation. The scale of this public health issue relative to the corresponding modest body of research evidence yields a broad research agenda. Papers are invited for this Special Issue that advance the development of guiding theoretical frameworks, clarify risk and protective processes, refine context sensitive measures, build intervention pathways, or inform service and policy developments.

Prof. Dr. Kenneth Pakenham
Dr. Giulia Landi
Guest Editor

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Keywords

parental mental and physical illness and disability
psychosocial impacts of parental illness on children and adolescents
young carers
youth caregiving
resilience
youth adjustment to parental illness
family health
youth quality of life
youth adjustment
youth mental health

Published Papers (14 papers)

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Research

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16 pages, 1909 KiB

Open AccessArticle

Does It Matter Who You Provide Care for? Mental Health and Life Satisfaction in Young Adult Carers Associated with Type of Relationship and Illness Category—A National Student Survey

by Bente Storm Mowatt Haugland, Mari Hysing and Børge Sivertsen

Int. J. Environ. Res. Public Health 2023, 20(5), 3925; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph20053925 - 22 Feb 2023

Viewed by 1137

Abstract

There is limited knowledge on how caring contexts impact young adults providing informal care for persons with chronic conditions. This study examines associations between outcomes in young adult carers (YACs) and type of relationship (e.g., close or distant family member, partner, or someone outside the family) and type of illness in the care-receiver (e.g., mental, physical illness/disability, or substance abuse). A total of 37,731 students (age 18–25, mean 22.3 years, 68% females) in higher education in Norway completed a national survey on care responsibilities, hours of daily caring, relationship and type of illness, mental health problems (Hopkins Symptoms Checklist-25) and life satisfaction (Satisfaction With Life Scale). More mental health problems and lower life satisfaction were found among YACs compared to students without care responsibilities. The poorest outcomes were reported by YACs caring for a partner, followed by YACs caring for a close relative. Hours spent on daily caring was highest when caring for a partner. Poorer outcomes were reported by YACs caring for someone affected by substance abuse, followed by mental health problems and physical illness/disability. At-risk groups among YACs should be acknowledged and offered support. Future studies are needed to investigate the potential mechanism for the associations between care context variables and YAC outcomes. Full article

(This article belongs to the Special Issue Effects of Parental Physical and Mental Illness on Children and Adolescents)

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17 pages, 385 KiB

Open AccessArticle

The Transition to Adulthood in Children of Depressed Parents: Long-Term Follow-Up Data from the Family Talk Preventive Intervention Project

by Taylor L. Myers, Tracy R. G. Gladstone and William R. Beardslee

Int. J. Environ. Res. Public Health 2023, 20(4), 3313; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph20043313 - 14 Feb 2023

Viewed by 1383

Abstract

Little is known about the effects of parental depression on offspring as they transition to adulthood—a challenging time developmentally, when late adolescents must separate from home, achieve intimate relationships, and develop a sense of identity. We present long-term quantitative and qualitative data from early adolescents with a depressed parent who were randomized to one of two family-based preventive interventions and followed over time, across the transition to young adulthood. Specifically, we present clinical measures of psychopathology and Likert-scale questionnaire data from young adults and their parents regarding the transition to adulthood and perceptions of the interventions. We also report in-depth qualitative interview data from young adults about the effects of parental depression on their transition to adulthood. Findings suggest that leaving home, establishing relationships, and coping with stressors may be challenging for emerging adults. Furthermore, the interviews highlight the importance of siblings, the burden of parental depression, and the development of self-understanding and empathy in young adults who grew up with a depressed parent. Data suggest that clinicians, policy makers, educators, and employers must address the preventive and clinical needs of young people and their families as they transition to young adulthood after growing up with depressed parents. Full article

(This article belongs to the Special Issue Effects of Parental Physical and Mental Illness on Children and Adolescents)

17 pages, 781 KiB

Open AccessArticle

Caregiving Responsibilities and Mental Health Outcomes in Young Adult Carers during the COVID-19 Pandemic: A Longitudinal Study

by Giulia Landi, Kenneth I. Pakenham, Roberto Cattivelli, Silvana Grandi and Eliana Tossani

Int. J. Environ. Res. Public Health 2022, 19(22), 15149; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph192215149 - 17 Nov 2022

Cited by 3 | Viewed by 1655

Abstract

This study investigated caregiving responsibilities and associated mental health outcomes in young adult carers during the COVID-19 pandemic and had three aims: (1) to investigate differences in caregiving responsibilities across two groups of young adult carers (parental illness context vs. ill non-parent family member context) relative to non-carers, (2) to identify COVID-19/lockdown correlates of caregiving responsibilities, and (3) to examine the longitudinal associations between caregiving responsibilities and mental health outcomes. Of the 1048 Italians aged 18–29 (Mage = 24.48, SDage = 2.80; 74.33% female) who consented to complete online surveys at Time 1, 813 reported no ill family member (non-carers). Young adult carers included 162 with an ill parent and 73 with an ill non-parent family member. The study included 3 time points: 740 participants completed Time 2 assessment (Mage = 24.35, SDage = 2.81; 76.76% female), while 279 completed Time 3 assessment (Mage = 24.78, SDage = 2.72; 79.93% female). Key variables measured were 13 COVID-19/lockdown factors at Times 1 and 2, caregiving responsibilities at Time 2, and mental health outcomes at Time 3 (fear of COVID-19, anxiety, depression, wellbeing). Two COVID-19/lockdown factors were significantly correlated with higher caregiving responsibilities: insufficient home space, and greater time spent working and learning from home. As predicted, young adult carers reported higher caregiving responsibilities than non-carers, and this effect was greater in young adults caring for an ill parent compared to young adults caring for an ill non-parent family member. As expected, irrespective of family health status, caregiving responsibilities were longitudinally related to poorer mental health outcomes, operationalised as higher fear of COVID-19, anxiety, and depression, and lower wellbeing. Elevated young adult caregiving is an emerging significant public health issue that should be addressed through a multipronged approach that includes education about young adult carer needs for personnel across all relevant sectors and flexible care plans for ill family members that include a ’whole family’ biopsychosocial approach. Full article

(This article belongs to the Special Issue Effects of Parental Physical and Mental Illness on Children and Adolescents)

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20 pages, 773 KiB

Open AccessArticle

The Patient’s Voice as a Parent in Mental Health Care: A Qualitative Study

by Hanna Stolper, Karin van Doesum, Petra Henselmans, Anne Lynn Bijl and Majone Steketee

Int. J. Environ. Res. Public Health 2022, 19(20), 13164; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph192013164 - 13 Oct 2022

Cited by 2 | Viewed by 1818

Abstract

Objective: This study is an evaluation of patients in mental health care who have undertaken treatment with an integrated family approach. The treatment focuses on the mental disorders of patients, their role as parents, the development of their young children, and family relationships. The treatment was conducted by professionals from an adult and a child mental health service in the Netherlands. The aim of the study was to identify the key elements and processes of this approach in order to develop a theoretical model. Background: Parental mental disorders have an impact on parenting and child development. To stop detrimental cascade effects and prevent parents and children from being caught up in the intergenerational transmission of psychopathology, a family approach in mental health care is needed. Methods: A qualitative design was adopted using thematic analysis. Data were collected through 18 interviews with patients. The themes in the interviews were which outcomes the patients experienced and which key elements of the treatment contributed to these outcomes. Results: In general, patients were satisfied with the treatment offered. Improved outcomes were within the domain of the family, the parent-child relationship, individual symptoms, and the functioning of the parent and the child. Patients mentioned six key elements of success in treatment: focus on the whole family, flexible treatment tailored to the situation of the family, components of the whole treatment reinforcing each other, multi-disciplinary consultation among involved professionals, a liaison between adult and child mental health services, and attention to the social and economic environment. Conclusions: According to the majority of patients, treatment with an integrated family approach in mental health care is of value for themselves, their children, and family relationships, especially the parent-child relationship. Full article

(This article belongs to the Special Issue Effects of Parental Physical and Mental Illness on Children and Adolescents)

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17 pages, 620 KiB

Open AccessArticle

Quality of Life of Adolescents Facing a Parental Illness: A Person-Oriented Approach

by Jade Pilato, Géraldine Dorard, Basilie Chevrier, Agnes Leu and Aurélie Untas

Int. J. Environ. Res. Public Health 2022, 19(13), 7892; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19137892 - 27 Jun 2022

Cited by 6 | Viewed by 2115

Abstract

Studies that have investigated the health-related quality of life (HRQoL) of adolescents facing a parental illness showed inconsistent results, and none used a person-oriented approach allowing for a deeper understanding of their experience. The aim of this study was to compare the HRQoL of adolescents facing a parental illness to that of their peers, and to explore their HRQoL through a person-oriented approach. The sample consisted of 1324 adolescents recruited in secondary schools (11–15 years old). Adolescents completed questionnaires assessing sociodemographic characteristics, parental illness, HRQoL (KIDSCREEN-52), and academic performance and caring activities (MACA-YC18). Adolescents facing a parental illness showed significantly lower HRQoL than their peers on all dimensions. The cluster analysis yielded five patterns of HRQoL among adolescents facing a parental illness: Low HRQoL; High HRQoL; Moderate HRQoL with High Social Acceptance; High Well-Being, High Moods and Emotions, and High Social Support and Peers. These clusters differed according to demographics, the type of parental illness, illness perception, academic performance, and level of caring activities. The Low HRQoL cluster showed especially low academic performance and high level of caring activities. This multidimensional HRQoL evaluation thus helps to foreground the diversity of these adolescents’ experiences in order to better address their needs. Full article

(This article belongs to the Special Issue Effects of Parental Physical and Mental Illness on Children and Adolescents)

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18 pages, 369 KiB

Open AccessArticle

Quality of Life of Schoolchildren Living with a Long-Term Sick Parent: The Role of Tasks at Home, Life Circumstances and Social Support

by Simone A. de Roos, Jurjen Iedema and Alice H. de Boer

Int. J. Environ. Res. Public Health 2022, 19(12), 7043; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19127043 - 08 Jun 2022

Cited by 2 | Viewed by 1634

Abstract

This study investigates whether there are differences in quality of life—i.e., psychosomatic complaints and life satisfaction—between schoolchildren with and without a chronically ill or disabled parent at home. It also examines the role played by the intensity of tasks, life circumstances, and social support at home and school. In 2017, a Dutch representative sample of adolescents aged between 12 and 16 (from the Health Behaviour in School-aged Children study) completed a questionnaire about illness of family members, tasks at home, life circumstances and characteristics, social support, psychosomatic complaints and life satisfaction. In total, 5470 schoolchildren who did not have a parent with a chronic illness and 652 who did have a parent with a chronic illness were selected (average age 13.9). Stepwise multilevel logistic regression analyses in STATA were used. Schoolchildren with an ill parent had more psychosomatic complaints and lower life satisfaction than their counterparts without an ill parent, even when controlling for extra task hours, specific life circumstances and characteristics (e.g., more likely to be growing up in a single-parent family or stepfamily and more likely to be female), and lower perceived support. These aspects are also predictors of a lower quality of life. Professionals should address these aspects of the life of schoolchildren with a sick parent in such a way that they are facilitated to make a successful transition to adulthood. Full article

(This article belongs to the Special Issue Effects of Parental Physical and Mental Illness on Children and Adolescents)

16 pages, 1116 KiB

Open AccessArticle

Young Carer Perception of Control: Results of a Phenomenology with a Mixed Sample of Young Carers Accessing Support and Unknown to Services

by Ed Janes

Int. J. Environ. Res. Public Health 2022, 19(10), 6248; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19106248 - 20 May 2022

Cited by 4 | Viewed by 1587

Abstract

Identification challenges have resulted in young carers research largely being conducted with those who access support. Positive and negative impacts have been evidenced but there remains little consideration of the wider population. This phenomenology defines young carers as a spectrum of children with different experiences and aims to study the larger group. Participants were recruited from schools and projects, resulting in a mixed sample of young carers who were accessing support but also those who were unknown to services. Participants attended three interviews that initially gathered data on their caring role and family circumstances, before focusing on their health and well-being in the context of change. All interviews were transcribed and analysed at a whole-text and in-depth level to identify shared understanding. A study of the wider spectrum enabled the emergence of perception of control over their caring responsibilities as key to routine development. Although high levels of control helped some participants manage their roles, threats to control were identified, including instability in the care receiver’s condition, excessive caring and medical tasks. The original findings demonstrate how researching the wider spectrum can aid understanding of problematic care, and highlights the importance of recruiting young carers as a hard-to-reach group. Full article

(This article belongs to the Special Issue Effects of Parental Physical and Mental Illness on Children and Adolescents)

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18 pages, 547 KiB

Open AccessArticle

Young Adult Carers during the Pandemic: The Effects of Parental Illness and Other Ill Family Members on COVID-19-Related and General Mental Health Outcomes

by Giulia Landi, Kenneth I. Pakenham, Silvana Grandi and Eliana Tossani

Int. J. Environ. Res. Public Health 2022, 19(6), 3391; https://doi.org/10.3390/ijerph19063391 - 13 Mar 2022

Cited by 19 | Viewed by 3078

Abstract

The mental health impacts of the COVID-19 pandemic on young adult carers have been neglected. This study aimed to identify COVID-19 related risk factors for young adult carers and to investigate their mental health relative to non-carer peers. Of the 1823 Italians aged 18–29 who completed an online survey, 1458 reported no ill family member (non-carers). Young adult carers included 268 with an ill parent, and 97 with an ill non-parent family member. Two mental health outcome categories were measured: COVID-19-related (risky health behaviors, loneliness, home violence, fear of COVID-19) and general (anxiety, depression, wellbeing). Six COVID-19 related risk factors were significantly correlated with poorer mental health in young adult carers. These factors constituted a COVID-19 Context Index. Compared to non-carers, young adult carers reported poorer mental health across all outcomes, as expected. The prediction that young adult carers caring for an ill parent would report poorer mental health than those caring for ill non-parent family members was evident only for the COVID-19-related mental health outcomes. The elevated rates of clinically significant distress and pandemic-related mental health problems among young adult carers highlight this group as a priority for mental health promotion interventions and whole-of-family support across multiple sectors. Full article

(This article belongs to the Special Issue Effects of Parental Physical and Mental Illness on Children and Adolescents)

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10 pages, 299 KiB

Open AccessArticle

Whether Disabled Parents Receive Personal Assistance for Parenting and the Consequences for Children—An Interview Study

by Ulrika Järkestig Berggren and Ann-Sofie Bergman

Int. J. Environ. Res. Public Health 2022, 19(6), 3330; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19063330 - 11 Mar 2022

Cited by 2 | Viewed by 2206

Abstract

Personal assistance, since its implementation in 1993, has been shown to provide support for persons with severe functional disabilities in their everyday life, ensuring inclusion in societal roles such as working life. Personal assistance (PA) may also provide support in parenting; however, with the right to PA becoming increasingly questioned in Sweden, parents with disabilities have varying experiences of receiving support for their role as parents. Experiences also differ in regard to how access to a personal assistant is important to their child’s daily life. The aim of this article is to shed light on the meaning of PA for parents and children in everyday life, especially when PA is reduced or even withdrawn. Eleven parents who have had or presently have PA were interviewed. The results show that parents describe that PA help them to fullfil their parental roles although the support could be more flexible to the needs of parents and their children. In situations when PA has been denied, children are negatively impacted and some children act by taking on responsibilities for the care of their parent. In conclusion; childrens’ perspective of their family life needs to be taken in consideration when assessing the rights to PA. Full article

(This article belongs to the Special Issue Effects of Parental Physical and Mental Illness on Children and Adolescents)

13 pages, 1557 KiB

Open AccessArticle

Parental Illness and Life Satisfaction among Young People: A Cross-Sectional Study of the Importance of School Factors

by Sanne Ellegård Jørgensen, Lau Caspar Thygesen, Anette Andersen, Pernille Due and Susan Ishøy Michelsen

Int. J. Environ. Res. Public Health 2022, 19(5), 2719; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19052719 - 26 Feb 2022

Cited by 1 | Viewed by 1581

Abstract

Background: The aim of this study was to examine the relationship between parental illness and life satisfaction among Danish adolescents and the potential modifying effect of positive school experiences. Moreover, we describe the use of student counsellor services among adolescents with and without ill parents. Methods: Data included 9565 adolescents primarily aged 13–19 years, who participated in the cross-sectional Well-being Despite Study. Multilevel logistic regression models including joint effect analyses were performed. Results: Parental illness was strongly associated with life satisfaction. Negative school experiences were more frequent among adolescents with ill parents and strongly associated with low life satisfaction for all students. However, joint effect analyses did not show effect modification by school-related variables. The odds ratio of having talked to a student counsellor was highest for adolescents with multiple ill parents, compared to no ill parents. Conclusions: Parental illness is a strong predictor of low life satisfaction among adolescents; the impact depends on number of ill parents, whether parental illness is physical or mental, and their level of impairment. Positive school experiences were less frequent in adolescents of ill parents and did not counteract the effect of parental illness on life satisfaction. Full article

(This article belongs to the Special Issue Effects of Parental Physical and Mental Illness on Children and Adolescents)

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11 pages, 907 KiB

Open AccessArticle

Facial Expression Processing of Children Orphaned by Parental HIV/AIDS: A Cross-Sectional ERP Study with Rapid Serial Visual Presentation

by Qi Zhao, Hui He, Huang Gu, Junfeng Zhao, Peilian Chi and Xiaoming Li

Int. J. Environ. Res. Public Health 2021, 18(19), 9995; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph18199995 - 23 Sep 2021

Viewed by 1749

Abstract

Existing behavioral studies have suggested that individuals with early life stress usually show abnormal emotional processing. However, limited event-related brain potentials (ERPs) evidence was available to explore the emotional processes in children orphaned by parental HIV/AIDS (“AIDS orphans”). The current study aims to investigate whether there are behavioral and neurological obstacles in the recognition of emotional faces in AIDS orphans and also to further explore the processing stage at which the difference in facial emotion recognition exists. A total of 81 AIDS orphans and 60 non-orphan children were recruited through the local communities and school systems in Henan, China. Participants completed a computer version of the rapid serial visual presentation (RSVP) task while recording ERPs. Behavioral results showed that orphans displayed higher response accuracy and shorter reaction time than the control (p_s < 0.05). As for the ERPs analysis, the attenuated amplitude of N170 (i.e., an early component sensitive to facial configuration) was observed in AIDS orphans compared to the non-orphan control with happy and neutral faces; P300 (i.e., an endogenous component for affective valence evaluation in emotional processing) also showed significant differences in parietal lobe between groups, the non-orphan control group produced larger P300 amplitudes than orphans (p < 0.05). The results suggested that compared to the control group, AIDS orphans showed impaired facial emotion recognition ability with reduced brain activation. Full article

(This article belongs to the Special Issue Effects of Parental Physical and Mental Illness on Children and Adolescents)

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Review

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18 pages, 479 KiB

Open AccessReview

Mental Health Is a Family Affair—Systematic Review and Meta-Analysis on the Associations between Mental Health Problems in Parents and Children during the COVID-19 Pandemic

by Markus Stracke, Miriam Heinzl, Anne Dorothee Müller, Kristin Gilbert, Anne Amalie Elgaard Thorup, Jean Lillian Paul and Hanna Christiansen

Int. J. Environ. Res. Public Health 2023, 20(5), 4485; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph20054485 - 02 Mar 2023

Cited by 9 | Viewed by 2925

Abstract

As a multidimensional and universal stressor, the COVID-19 pandemic negatively affected the mental health of children, adolescents, and adults worldwide. In particular, families faced numerous restrictions and challenges. From the literature, it is well known that parental mental health problems and child mental health outcomes are associated. Hence, this review aims to summarize the current research on the associations of parental mental health symptoms and child mental health outcomes during the COVID-19 pandemic. We conducted a systematic literature search in Web of Science (all databases) and identified 431 records, of which 83 articles with data of over 80,000 families were included in 38 meta-analyses. A total of 25 meta-analyses resulted in significant small to medium associations between parental mental health symptoms and child mental health outcomes (r = 0.19 to 0.46, p < 0.05). The largest effects were observed for the associations of parenting stress and child mental health outcomes. A dysfunctional parent–child interaction has been identified as a key mechanism for the transmission of mental disorders. Thus, specific parenting interventions are needed to foster healthy parent–child interactions, to promote the mental health of families, and to reduce the negative impacts of the COVID-19 pandemic. Full article

(This article belongs to the Special Issue Effects of Parental Physical and Mental Illness on Children and Adolescents)

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16 pages, 776 KiB

Open AccessReview

Growing up with a Chronically Ill Family Member—The Impact on and Support Needs of Young Adult Carers: A Scoping Review

by Hinke M. van der Werf, Marie Louise A. Luttik, Alice de Boer, Petrie F. Roodbol and Wolter Paans

Int. J. Environ. Res. Public Health 2022, 19(2), 855; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19020855 - 13 Jan 2022

Cited by 13 | Viewed by 3520

Abstract

This scoping review provides an overview of the impact of growing up with a chronically ill family member on young adults (18–25 years old), and their specific needs. Young adults represent an important life stage involving a transition to adulthood, during which individuals’ family situations can affect their future. We searched relevant studies following the guideline of Arskey and O’Mailley’s methodological framework and the PRISMA statement guidelines for scoping reviews in PubMed, PsychInfo and reference lists to identify articles for inclusion. Studies from 2005 to 2020 were included in this review. Of the 12 studies, six qualitative studies, five quantitative studies and one mixed method study were included. Eight studies discussed the impact, including consequences at a physical and mental level, at their personal development and future perspectives, but also positive effects, such as being capable of organizing their lives. Four studies discussed the needs of young adult carers, including emotional needs, support needs with regard to stimulating autonomy (arising from internal conflicts) and developing their own identity, and the concerned attitude of involved professionals. An unambiguous definition of the target group and further well-designed research are needed to improve clarity about the role of support, so that future professionals can adequately address the needs and wishes of young adults who grow up with an ill family member. Full article

(This article belongs to the Special Issue Effects of Parental Physical and Mental Illness on Children and Adolescents)

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Other

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10 pages, 508 KiB

Open AccessStudy Protocol

Getting the FACS: A Protocol for Developing a Survey Instrument to Measure Carer and Family Engagement with Mental Health Services

by Darryl Maybery, Andrea Reupert, Irene Casey Jaffe, Rose Cuff, Zoe Duncan, Addy Dunkley-Smith, Anne Grant, Melissa Kennelly, Bjørg Eva Skogøy, Bente Weimand and Torleif Ruud

Int. J. Environ. Res. Public Health 2022, 19(23), 16279; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph192316279 - 05 Dec 2022

Viewed by 1424

Abstract

Government policies recommend, and all stakeholders benefit, when mental health services meaningfully engage with carers and family. However, health service engagement with carers is inadequate, and often non-existent with children whose parents are service users. There are seven fundamental ways that carers and families want to be integrated with and engaged by health services but current survey instruments do not capture these seven engagement practices. This protocol describes the development of two closely aligned Family and Carer Surveys (FACS) to measure engagement of service users in mental health services. The new measures are based on the seven engagement themes and a conceptual distinction between the carer and family, with particular focus on where the service user is a parent. The instruments will be developed in five stages; (1) item generation (2) Cognitive pretesting of survey (3) preliminary item content quantitative assessment (4) psychometric analysis of a large data collection and (5) selection of items for short form instruments. These steps will operationalise the seven fundamental ways that families and carers want to be engaged with mental health services, thereby providing valid and reliable measures for use in research and benchmarking of carer and family engagement. Full article

(This article belongs to the Special Issue Effects of Parental Physical and Mental Illness on Children and Adolescents)

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