A search for information on caregiving resulted from my involvement with the roll-out of a revised direct-pay respite program for families of children with intellectual disabilities in Saskatchewan. One consistent finding was the isolation experienced by many families and their need for supports extending beyond the financial realm. Many of these articles reflect these needs.
*Note: These contents are assembled from several web sites, some of whom are now defunct. Although I have the documents in my records, I've provided the current links to available items. Copies of material from defunct sites, as well as my works, are provided. Copyright belongs to the authors and/or publishers of the material according to the information contained in the documents. An internet search of the titles or of content from the material should be made for referencing purposes. The owner of this web site only claims authorship where indicated within the material.
A Model of Stress in Families of Children with Developmental Disabilities: Clinical and Research Applications — This paper presents a theoretical model for understanding stress and related issues in families of children with developmental disabilities (DD).
AUTISM ISOLATION SYNDROME by: Rebecca Sperber, M.S., MFT — Families with autistic children face many challenges. Emotional, physical, financial, and social difficulties arise in a variety of different contexts... One way families cope with this stress is to isolate themselves from people and situations.
Building Capacity for a National Family Support Policy Agenda 2005 — The evaluation was designed to document the proceedings of the policy forum, to gauge the level and quality of family member particpation in engaging with the policy agenda, and to reflect on opportunities for strengthening family networks in relation to policy engagement.
Canadian Coalition for Family Supportive Policy Declaration 2004 — from the PLAN Institute for Caring Citizenship: works to reduce the isolation of people at the margins of society, and to enable the contributions of all members of our community. see http://institute.plan.ca/
Effective Life Management in Parents of Children with Disabilities: A Cross-National Extension (2004) — This study is part of an on-going research program exploring life management in families of children with a variety of disability characteristics and age ranges. Scorgie, Wilgosh, and McDonald (1996) used a qualitative, interview methodology to identify effective strategies, qualities, and transformational outcomes for parents of children with disabilities who had been identified, by service agencies, as having effective life management strategies.
Families and intellectual disability. Blacher J, (2005) — To contact the author, see http://facultydirectory.ucr.edu/cgi-bin/pub/public_individual.pl?faculty=27
Family Environments and Family Harmony: An exploration across Severity, Age, and Type of DD — The concept of family environment was explored inparents of children with developmental disabilities (DD)using the Moos & Moos (1981) Family Environment Scale (FES).
Family quality of life from the perspective of older parents N. S. Jokinen, R. I. Brown (2005) — Family quality of life is a relatively new field of study. Research has primarily concentrated on families of children and young adults with intellectual disability (ID).
Family Support Services in the United States (2006) — Family support for families of children with disabilities consists of a range of services or supports including direct cash payments to families, vouchers, reimbursement, or direct payments to service providers that help families keep their children at home.
ISOLATION: CARING FOR A CHILD WITH SPECIAL NEEDS — ONE OF THE GREATEST CHALLENGES OF PARENTING A CHILD WITH SPECIAL NEEDS, IS FEELING ALONE.
Life Course Impacts of Parenting a Child With a Disability (2001) — For more resources see http://www.waisman.wisc.edu/
Older Parents Caring for Adult Sons/Daughters with Lifelong Disabilities — There are growing numbers of older parents caring for adult sons/daughters with lifelong disabilities.They experience changes in their caregiving needs, routines, and patterns as both the caregivers and care receivers grow older. These families often find themselves facing increasing demands while experiencing diminishing resources of health, income and social support.
Parent Involvement in Functional Assessment of Problem Behaviors Related to ADHD as a Basis for Intervention Selection November 2009 — Behavioral parent training (BPT) is a well-established, empirically validated treatment for children with attention deficit hyperactivity disorder (ADHD). Interventions focus on teaching parents how to identify and modify environmental factors that may be maintaining their child’s problem behavior. Recent literature suggests that assessment of behavior function as a basis for intervention selection, tailored to the individual child, improves treatment effectiveness.
Parent Life Management and Transformational Outcomes When a Child has Down Syndrome (2001) — Our research examines three aspects of effective life management in parents of children with disabilities: strategies parents find helpful for effectively managing life, personal qualities that parents consider important to effective life management, and parent transformational outcomes on personal, relational and perspectival dimensions.
Parents for Life: Negotiating residential arrangements for adults with developmental disabilities (2000, thesis) — This dissertation studies families that include a co-resident adult with developmental disabilities. It explores why parents and their adult child continue to live together, families' desires for long-term living arrangements, and the ongoing dynamics of decision-making and negotiation aimed at preserving current arrangements or implementing new ones.
Parents for Life: Negotiating residential arrangements for adults with developmental disabilities John Rietschlin 2008 Canada — (Complete thesis, Western Ontario) This dissertation studies families that include a CO-resident adult with developmental disabilities. It explores why parents and their adult child continue to live together, families' desires for long-term living arrangements, and the ongoing dynamics of decision-making and negotiation aimed at preserving current arrangements or implementing new ones.
People with profound intellectual and multiple disabilities: Understanding and realising their needs and those of their carers (Hogg, 1999) — We have considered above the implications of what is known about people with profound intellectual and multiple disabilities for providing services that enhance the quality of the person’s life. We have also drawn attention to the important role families can play and the need for staff to see them as partners in, rather than obstructions to, what it is hoped to achieve in the service setting.
Providing Financial Support to Family Members who are Caring for People Experiencing Ill-health, Disability, Mental Illness or Addiction, or Frailty in their Old Age. March 2008 — The paper first discusses the number and characteristics of family carers and the drivers behind New Zealand taking a new look at its policies for care giving for people experiencing ill-health, disability, mental illness, addiction or frailty in their old age. It then looks at family care-giving in the international context of country policies on care.
Psychological Well-Being and Coping in Mothers of Youths With Autism, Down Syndrome, or Fragile X Syndrome (2004) — The most consistent predictor of maternal outcomes was the adolescent or young adult’s behavioral symptoms.
Respite for Family Caregivers - An Environmental Scan of Publicly-funded Programs in Canada -2003 — This report is an environmental scan of respite for family caregivers provided by publicly funded programs in Canada at the federal, provincial and territorial level.
Strengthening Supports for Children 0 – 8 years and their Families: A Literature Review 2014 — This report presents the findings of a systematic review of the literature on interventions provided in mainstream settings for children with disabilities aged 0 to 8 years and their families. Further, the focus of the review is on inclusion-based approaches to delivering services in mainstream settings.
Support Groups for Parents of Children with Autism Spectrum Disorders: Predictors and Effects of Involvement by Tessen Clifford (2011, thesis) — Parents of children with autism spectrum disorders (ASD) are a particularly stressed group who can benefit from support (Blacher & McIntyre, 2006).
The Family Quality of Life Scale (FQOL) 2012 — This issue of INspire is dedicated to Family Quality of Life (FQOL) of families that have a son or a daughter with a disability. In it, you will find the latest in Canadian and international research and development in the area of FQOL.
THE IMPACT OF SOCIAL SUPPORT AND FAMILY RESILIENCE ON PARENTAL STRESS IN FAMILIES WITH A CHILD DIAGNOSED WITH AN AUTISM SPECTRUM DISORDER Jennifer C. Plumb (2011, thesis) — To date, little research has examined the relationship between social support, family resilience and parental stress in families with a child diagnosed with ASD.
THE INCREASING POPULATION OF OLDER PARENTS CARING FOR ADULT SONS/DAUGHTERS WITH LIFELONG DISABILITIES — This review examines the literature pertaining to aging parents who are the primary caregivers to their adult sons/daughters with lifelong disabilities, focusing on the experiences of parents and their changing needs as they age.
the McConnell Foundation — The McConnell Foundation is a private Canadian foundation that develops and applies innovative approaches to social, cultural, economic and environmental challenges. We do so through granting and investing, capacity building, convening, and co-creation with grantees, partners and the public.
This Day is for Me: Caring for the Caregivers by SILVER DONALD CAMERON (2003) — In fact caregiving, most often by family members, is the invisible back-up that allows our health care system to keep functioning as it continues to shift away from institutionalized care. But our health and social services systems are woefully inadequate in even recognizing, let alone assisting, caregivers.