The Children’s Society
Young Carers in Armed Forces Families: Evidencing the Need

Grant Charles, Tim Stainton, & Sheila Marshall | School of Social Work, University of British Columbia
Young Carers in Canada: The Hidden Costs and Benefits of Young Caregiving
 
Melanie A. Prince, MSN, BSN, NE-BC, CCM, FAAN
The Power Of Communication

Laura Skufca, Ian Hartman O’connell, AARP Research
Student Caregivers Face Challenging Dual Responsibilities: The Unique Experience of Students Who are Family Caregivers

Emma Armstrong- Carter, Stanford University; Catherine Johnson & Julia Belkowitz, University of Miami Miller School of Medicine; Connie Siskowski, The American Association of Caregiving Youth; & Elizabeth Olson, University of North Carolina at Chapel Hill
Social Policy Report: The United States should recognize and support caregiving youth

Advisory Council to Support Grandparents Raising Grandchildren, with assistance from: Administration for Community Living, an operating division of the U.S. Department of Health and Human Services
Supporting Grandparents Raising Grandchildren (SGRG) Act: Initial Report to Congress

Mark J. Yaffe, MDCM, MClSc, CCFP, FCFP, & Barry J. Jacobs, PsyD
Education about family caregiving: Advocating family physician involvement

Connie Siskowski, RN, PHD
The Role of Caregiving Youth in Multi-Generation Households

Donna R. Miles, Ph.D.; Michael J. Steiner, M.D.; Karen J. Luken, M.S.; Michael R. Sanderson, M.P.H.; Tamera Coyne-Beasley, M.D., M.P.H.; Harry Herrick, M.S.P.H., M.S.W., M.Ed.; Elizabeth Mizelle, M.P.H.; Carol A. Ford, M.D.
Health and educational status of children raised by a caregiver with a disability

Ava J. Reck, M.S. & Steven M. Kogan, Ph.D.
Family Stress and Rural African-American Adolescents’ Depressive Symptoms

Minakshi Raj, Ph.D., M.P.H.; Sara J. Feldman, M.P.H.; Jodyn E. Platt, Ph.D.; Tammy Chang, M.D., M.P.H., M.S.
“If It Needs to be Done, It Needs to be Done”: National Survey of Youth Experiences and Perspectives on Caregiving

Carl G. Streed, Jr, MD
Terminology Related to Sexual Orientation, Gender Identity, and More

Connie Siskowski, Rn, PhD
Young Caregivers: Effect of Family Health Situations on School Performance

Tate Gunnerson
A growing phenomenon, youth caregivers need recognition, support

The Change Foundation
Patient and Family Engagement in Primary Care: Building effective patient and family advisory councils in three Ontario communities

AARP & The Chronicle of Higher Education
The Challenges of Student Caregivers: How Higher Ed Can Better Support Those Caring for Adults

AARP & The Chronicle of Higher Education
How One College Cares for Student Caregivers: A community college in Ohio has developed services to support those with elderly or sick parents.

The Rosalynn Carter Institute for Caregiving
Caregivers in Crisis: Caregiving in the Time of Covid-19

The Annie E. Casey Foundation
2021 Kids Count Data Book: 2021 State Trends in Child Well-Being

Jo Aldridge
All Work and no Play? Understanding the Needs of Children with Caring Responsibilities
Aldridge, Jo, All Work and no Play? Understanding the Needs of Children with Caring
Responsibilities., CHILDREN & SOCIETY VOLUME 22, (2008) pp. 253–264
DOI:10.1111/j.1099-0860.2007.00094.x

Deborah J. Amend
Turning the Tables: Children Caring for Family
Amend, Deborah J., “Turning the Tables: Children Caring for Family,” Child Welfare League of America: Children’s Voice, Vol. 15, No. 3, May/June 2006

ASA Staff
Shining a light on young caregivers: America’s only youth caregiving group illumines a silent epidemic
ASA Staff, “Shining a light on young caregivers
America’s only youth caregiving group illumines a silent epidemic,” American Society on Aging, Aging Today, ISSN: 1043-1284 Page 1 September–October 2011
www.agingtoday.org volume xxxii number 5

Baker, G.
Unseen and unheard: The invisible young carers
“Unseen and unheard: The invisible young carers.”
Baker, G. (2002).
The Princess Royal Trust for Carers. London.

Banks, P., Gallagher, E., Nill, M,. & Riddell, S.
Literature review of identification, needs and assessment and service provision for young carers and their families
“Literature review of identification, needs and assessment and service provision for young carers and their families.”
Banks, P., Gallagher, E., Nill, M,. & Riddell, S. (2002).
Centre for the Child and Society and Strathclyde Centre for Disability, Research University of Glasgow.

Barquet, Nelson
The Internet and Social Media: A Curse on Our Kids? Not if They are Caregiving Kids
“The Internet and Social Media: A Curse on Our Kids? Not if They are Caregiving Kids”
Barquet, Nelson
Ezine Articles, April 15, 2011

Saul Becker
Global Perspectives on Children’s Unpaid Caregiving in the Family: Research and Policy on ‘Young Carers’ in the UK, Australia, the USA and Sub-Saharan Africa
Becker Saul, “Global Perspectives on Children’s Unpaid Caregiving in the Family: Research and Policy on ‘Young Carers’ in the UK, Australia, the USA and Sub-Saharan Africa.,”
 Global Social Policy 2007; 7; 23, DOI: 10.1177/1468018107073892

Becker, S.
YOUNG CARERS: USEFUL READING
“YOUNG CARERS: USEFUL READING” (revised January 2007)
Becker, S.

Carers National Association (CNA)
In on the act?
“In on the act?”
Carers National Association (CNA). (1997).
London: Author

Donna Cohen, Jennifer A. Greene, Peter
A. Toyinbo & Constance T. Siskowski
Impact of Family Caregiving by Youth on Their Psychological Well-Being: A Latent Trait Analysis
Cohen, Donna, Greene, Jennifer A., Toyinbo, Peter A., Siskowski, Constance T., Impact of Family Caregiving by Youth on Their Psychological Well-Being: A Latent Trait Analysis, The Journal of Behavioral Health Services & Research 2012

Coles, A. R., Pakenham, K. I., Leech, C.
Evaluation of an intensive psychosocial intervention for children of parents with Multiple Sclerosis
“Evaluation of an intensive psychosocial intervention for children of parents with Multiple Sclerosis.”
Coles, A. R., Pakenham, K. I., Leech, C. (2007).
Rehabilitation Psychology, 52(2), 133-142.

Commonwealth Department of Family and Commnity Services
Young carers research project final report
“Young carers research project final report.”
Carers Australia. (2001).
Commonwealth Department of Family and Commnity Services. Author.

Viviene E. Cree
Worries and problems of young carers: issues for mental health
Cree, Viviene, Worries and problems of young carers: issues for mental health, Child and Family Social Work 2003, 8, pg. 301-309

Dearden, C. & Becker. S.
Young carers in the U.K. the 2004 report
“Young carers in the U.K. the 2004 report.”
Dearden, C. & Becker. S. (2004).
Carers National Association, London.

Naelys Diaz,
Connie Siskowski, Laurie Connors
Latino Young Caregivers in the United States: Who are they and what are the Academic Implications of this Role?
Diaz, Naelys, Siskowski, Connie, Connors, Laurie, Latino Young Caregivers in the United States: Who are they and what are the Academic Implications of this Role?, Child Youth Care Forum (2007) 36: 131-140

Patricia L. East
Children’s Provision of Family Caregiving: Benefit or Burden?
East, Patricia, Children’s Provision of Family Caregiving: Benefit or Burden?, Child Development Perspectives, Volume 4, Number 1, Pages 55-61

Patricia L. East, Thomas S. Weisner
Mexican American Adolescents’ Family
Caregiving: Selection Effects and Longitudinal Associations With Adjustment
East, L. Patricia, Weisner, S. Thomas, Mexican American Adolescents’ Family
Caregiving: Selection Effects and Longitudinal Associations With Adjustment., Family Relations 58, December 2009: 562-577

E.Esu-Williams, K.D.Schenk, S.Geibe, J.Motsepe, A.Zulu. P.Bweupe, & E.Weiss
‘We are no longer called clubmembers but caregivers’:  Involving youth in HIV and AIDS caregiving in rural Zambia
“’We are no longer called clubmembers but caregivers’:  Involving youth in HIV and AIDS caregiving in rural Zambia ”
E.Esu-Williams, K.D.Schenk, S.Geibe, J.Motsepe, A.Zulu. P.Bweupe, & E.Weiss
AIDS Care, November 2006; 18(8): 884-894

Fraser, E., & Pakenham, K. I.
Resilience in children of parents with mental illness: relations between mental health literacy, social connectedness and coping, and both adjustment and caregiving
“Resilience in children of parents with mental illness: relations between mental health literacy, social connectedness and coping, and both adjustment and caregiving”,
Fraser, E., & Pakenham, K. I. (2009).
 Psychology, Health and Medicine, 14, 573-584.

Fraser, E., & Pakenham, K. I.
Evaluation of a resilience-based intervention for children of parents with mental illness
“Evaluation of a resilience-based intervention for children of parents with mental illness.”
Fraser, E., & Pakenham, K. I. (2008).
Australian & New Zealand Journal of Psychiatry, 42, 1041-1050.

Gates, M.F. & Lackey, N.R.
“Combining the analyses of three qualitative data sets in studying young caregivers.”
Gates, M.F. & Lackey, N.R. (1997).
Journal of Advanced Nursing, 26 664-671.

Gates, M. F. & Lackey, N. R.
Youngsters caring for adults with cancer
Youngsters caring for adults with cancer.”
Gates, M. F. & Lackey, N. R. (1998). “
Image: The Journal of Nursing Scholarship, 30(1), 11-15.

Gays, M
Getting it right for young carers in the ACT
“Getting it right for young carers in the ACT.”
Gays, M. (2000).
7th Australian Institute of Family Studies Conference, Sydney, July 24-26, 2000.
www.aifs.gov.au/institute/afrc7/gays.html

GRANT CHARLES, TIM STAINTON & SHEILA MARSHALL
Young Carers in Canada
The Hidden Costs and Benefits of Young Caregiving
“Young Carers in Canada
The Hidden Costs and Benefits of Young Caregiving”
GRANT CHARLES, TIM STAINTON & SHEILA MARSHALL
SCHOOL OF SOCIAL WORK, UNIVERSITY OF BRITISH COLUMBIA
2012, The Vanier Institute of the Family.

Jonathan Herring
Where are the carers in healthcare law and ethics?
“Where are the carers in healthcare law and ethics? ”
Jonathan Herring
Legal Studies, Vol. 27 No. 1, March 2007, pp. 51–73

Hill, S.
The physical effects of caring on children
“The physical effects of caring on children.”
Hill, S. (1999).
Journal of Young Carers Work, 3, 6-7.

Christy Hom
Kids as Caregivers
Hom, Christy, Kids as Caregivers, Grand, May June 2011, pg. 32-33

Gail Hunt, Carol Levine, Linda Naiditch
Young Caregivers in the U.S.
Hunt, Gail, Levine, Carol, Naiditch, Linda, Young Caregivers in the U.S: Report of Findings, September 2005

Michael J. Irelanda; Kenneth I. Pakenhama
Youth adjustment to parental illness or disability: The role of illness characteristics, caregiving, and attachment
Ireland, Michael J. and Pakenham, Kenneth I.(2010) ‘Youth adjustment to parental illness or disability:
The role of illness characteristics, caregiving, and attachment’, Psychology, Health & Medicine, 15: 6, 632 — 645

Michael James Irelanda; Kenneth Ian Pakenhama
The nature of youth care tasks in families experiencing chronic
illness/disability: Development of the Youth Activities of Caregiving Scale
(YACS)
Ireland, Michael James and Pakenham, Kenneth Ian(2010) ‘The nature of youth care tasks in families
experiencing chronic illness/disability: Development of the Youth Activities of Caregiving Scale (YACS)’, Psychology &
Health, 25: 6, 713 — 731, First published on: 06 May 2009 (iFirst)

Ireland , M., & Pakenham, K. I.
The nature of young caregiving in families experiencing chronic illness/disability
“The nature of young caregiving in families experiencing chronic illness/disability”
Ireland , M., & Pakenham, K. I. (2010)
Development of the Youth Activities of Caregiving Scale (YACS), Psychology and Health, 25, 713-731.

Stephen Joseph, Fiona Becker, and Saul Becker
Manual for Measures of Caring Activities and Outcomes for Children and Young People
Manual for Measures of Caring Activities and Outcomes for Children and Young People
Stephen Joseph, Fiona Becker, and Saul Becker
London, The Princess Royal Trust for Carers

Christopher A. Kearney
School absenteeism and school refusal behavior in youth: A contemporary review
Kearney, Christopher A., School absenteeism and school refusal behavior in youth: A contemporary review, Clinical Psychology Review 28 (2008) 451-471

Thomas J. McMahon, Suniya S. Luther
Defining Characteristics and Potential Consequences of Caretaking Burden Among Children Living in Urban Poverty
McMahon, Thomas J., Luther, Suniya S., Defining Characteristics and Potential Consequences of Caretaking Burden Among Children Living in Urban Poverty, American Journal of Orthopsychiatry, 2007. Vol. 77. No. 2. 267-281

McClure, L.
School-age caregivers: Perceptions of school nurses working in Central England
“School-age caregivers: Perceptions of school nurses working in Central England.”
McClure, L. (2001).
Journal of School Nursing, 17(2), 76-82.

Tim Moore
 Young carers and education:
 Identifying the barriers to satisfactory education for young carers
Moore, Time, Young carers and education:
 Identifying the barriers to satisfactory education for young carers., Youth Carers Australia, v.24, n.4, 2005

Tim Moore and Morag McArthur
We’re all in it together: supporting young carers and their families in Australia
Blackwell Publishing Ltd
We’re all in it together: supporting young carers and their families in Australia, Health and Social Care in the Community (2007), 15 (6), 561–568, doi: 10.1111/j.1365-2524.2007.00719.x

Tim Moore Morag, McArthur, Debbie Noble-Carr
‘Different but the same? Exploring the
experiences of young people caring for a parent with an alcohol or other drug issue
Moore, Tim , McArthur, Morag and Noble-Carr, Debbie(2011) ‘Different but the same? Exploring the
experiences of young people caring for a parent with an alcohol or other drug issue’, Journal of Youth Studies, 14: 2, 161
— 177, First published on: 11 November 2010 (iFirst)

Tim Moore, Ros Morrow, Morag McArthur, Debbie Noble-
Carr and Jamie Gray
Reading, writing and
responsibility: Young Carers
and Education
Moore, Tim, Ros Morrow, Morag McArthur, Debbie Noble-Carr, and Jamie Gray. Reading, Writing, and Responsibility: Young Carers and Education. Rep. N.p.: n.p., 2006. Print.

National Alliance for Caregiving (NAC) & The United Hospital Fund
Young caregivers in the U.S
“Young caregivers in the U.S.”
National Alliance for Caregiving (NAC) & The United Hospital Fund. (2005).
Washington, D.C. Author.

Alex Okun, Denise Callarman
Pediatricians can support children who care for family members with special needs
Okun, Alex, Callarman, Denise, Pediatricians can support children who care for family members with special needs, AAP News, Volume 32, Number 12, December 2011, www.aapnews.org

Pakenham, K. I
“Children who care for their parents: the impact of disability on young lives.”
“Children who care for their parents: the impact of disability on young lives.”
Pakenham, K. I. (2009).
In Marshall , C.A. , Kendall , E., Banks, M., & Gover, R.M.S. (Eds.) Disability: Insights From Across Fields and Around the World, Vol II, (pp. 39-60). Westport , CT : Praeger Press.

Pakenham, K. I., & Bursnall, S
Relations between social support, appraisal and coping and both positive and negative outcomes for children of a parent with MS and comparisons with children of healthy parents
“Relations between social support, appraisal and coping and both positive and negative outcomes for children of a parent with MS and comparisons with children of healthy parents”,
Pakenham, K. I., & Bursnall, S. (2006)
 Clinical Rehabilitation, 20, 709-723.

Pakenham, K. I., Chiu, J., Bursnall, S., & Cannon, T.
Relations between social support, appraisal and coping and both positive and negative outcomes in young carers
“Relations between social support, appraisal and coping and both positive and negative outcomes in young carers.”
Pakenham, K. I., Chiu, J., Bursnall, S., & Cannon, T. (2007).
Journal of Health Psychology, 12, 89-102.

Pakenham, K. I., Bursnall, S., Chiu, J., Cannon, T., & Okochi,M.
The psychosocial impact of caregiving on young people who have a parent with an illness or disability: comparisons between young caregivers and non-caregivers
“The psychosocial impact of caregiving on young people who have a parent with an illness or disability: comparisons between young caregivers and non-caregivers.”
Pakenham, K. I., Bursnall, S., Chiu, J., Cannon, T., & Okochi,M. (2006).
Rehabilitation Psychology, 51, 113-126.

Joanne Pollard
International Young Carers Manual
International Young Carers Manual
Joanne Pollard, WAAMH (Western Australian Association Mental Health)

Princess Royal Trust for Carers
Too much to take on–A report on young carers and bullying
“Too much to take on–A report on young carers and bullying.”
Princess Royal Trust for Carers. (1999).
London: Author.

Helena D. Rosea; Keren Cohenb
The experiences of young carers: a meta-synthesis of qualitative findings
Rose, Helena D. and Cohen, Keren(2010) ‘The experiences of young carers: a meta-synthesis of
qualitative findings’, Journal of Youth Studies, 13: 4, 473 — 487

Ryan, A. & Fox, A.
Working with young carers in the United Kingdom
“Working with young carers in the United Kingdom.”
Ryan, A. & Fox, A. (2003). Princess Royal Trust for Carers, London and Leeds, United Kingdom.

Jeff Ryan
How to help youth caregivers:
Children caring for sick relatives need some attention of their own.
Ryan, Jeff, How to help youth caregivers:
Children caring for sick relatives need some attention of their own., March 1, 2008

Siskowski, C.
Young caregivers: Effect of family health situations on school performance
“Young caregivers: Effect of family health situations on school performance.”
Journal of School Nursing, 3(3), 163-169.
Siskowski, C. (2006).

Siskowski, Connie
From Their Eyes…
Family Health Situations
Influence Students’ Learning and Lives In
Palm Beach County, Grades 6-12
“From Their Eyes…
Family Health Situations
Influence Students’ Learning and Lives In
Palm Beach County, Grades 6-12,” Siskowski, Connie, August 2003

Siskowski, Connie
Caregiving Counts
“Caregiving Counts,” Siskowski, Connie, 2009

Siskowski, Connie
Caregiving Youth in Largo Middle and High Schools Largo, Florida
“Caregiving Youth in Largo Middle and High Schools Largo, Florida,” Siskowski, Connie, July 2006

Siskowski, Connie
Family Caregiving 101
“Family Caregiving 101,” Siskowski, Connie, BRIA 2001

Siskowski, Connie
Invisible Family Heroes
“Invisible Family Heroes,” Siskowski, Connie

Siskowski, Connie
Levels of Responsibility
“Levels of Responsibility,” Siskowski, Connie, Caregiving Youth Project

Siskowski, C. , Diaz, N., Connors, L., Mize, N.
Recognition and assessment of caregiving youth in hospice and home healthcare
“Recognition and assessment of caregiving youth in hospice and home healthcare.”
Home Healthcare Nurse. 25(7), 433-438.
Siskowski, C. , Diaz, N., Connors, L., Mize, N. (2007).

Ciara Smytha; Megan Blaxlanda; Bettina Cassa
‘So that’s how I found out I was a young carer and that I actually had been
a carer most of my life’. Identifying and supporting hidden young carers
Smyth, Ciara , Blaxland, Megan and Cass, Bettina(2011) ”So that’s how I found out I was a young carer
and that I actually had been a carer most of my life’. Identifying and supporting hidden young carers’, Journal of Youth
Studies, 14: 2, 145 — 160, First published on: 24 August 2010 (iFirst)

Stephanie Stephens
CAREGIVER
KIDS
Stephens, Stephanie, Caregiver Kids,
 Heart Insight, August 2008, pg. 19-21

Judith A. Stein, Marion Riedel, Mary Jane Rotheram-Borus
Parentification and Its Impact on Adolescent Children of Parents with AIDS.
Stein, Judith A., Riedel, Marion, Rotheram-Borus, Mary Jane, Parentification and Its Impact on Adolescent Children of Parents with AIDS. Fam Proc 38: 193-208, 1999

Tatum, C.
Northern Ireland young carers
“Northern Ireland young carers.”
Tatum, C. (1999).
Journal of Young Carers Work, 2, 26-27.

Jennifer Tormo
Caring for Caregivers
Tormo, Jennifer, Caring for Caregivers, Boca Life, gulfstreammediagroup.com, February 2013

Deborah Viola, Peter Arno, Connie Siskowski,
Donna Cohen, Michael Gusmano
The Economic Value of
Youth Caregiving in the
United States
Viola, Deborah, Arno, Peter, Siskowski, Connie, Cohen, Donna, Gusmano, Michael, The Economic Value of Youth Caregiving in the United States, Relational Child and Youth Care Practice Volume 25 Number 2, pg. 10-13

Janet Warren
Young Carers: Conventional or Exaggerated
Levels of Involvement in Domestic and
Caring Tasks?
Warren, Janet,Young Carers: Conventional or Exaggerated
Levels of Involvement in Domestic and
Caring Tasks?, CHILDREN & SOCIETY VOLUME 21, (2007) pp. 136–146
DOI:10.1111/j.1099-0860.2006.00038.x

Marc Watrous, Connie Siskowski
Student pharmacists’ role
with caregiving youth
Watrous, Marc, Siskowski, Connie, Student pharmacists’ role with caregiving youth, American Pharmacists Association, July/August 2013, pg.10