Medicine and Health Sciences Commons^™

Integrative Review: Parent Perspectives On Care Of Their Child At The End Of Life, Ann P. Aschenbrenner, Jill M. Winters, Ruth Ann Belknap

College of Nursing Faculty Research and Publications

This integrative review aims to describe parents' perspectives on end-of-life care for their children. Fifteen publications from a literature search of the Cochrane databases, CINAHL, MEDLINE, and PSYCHinfo were included in the review. Recurring themes included poor communication/lack of information, strained relationships/inadequate emotional support, parental need to maintain parent/child relationships in life and death, quality of care continues after the death of the child, influence of services/planning on parent/child impacts quality of life, and the difficult decision to terminate life support. No studies were identified that focused on parents' perspectives on the care their child received at the end of …

The Paradoxical Food Buying Behaviour Of Parents: Insights From The Uk And Australia, Gary I. Noble, Sandra C. Jones, Danielle Mcvie, Laura Mcdermott, Martine Stead

Gary Noble

AbstractPurpose - This article aims to explore the apparent paradox between the nutritional knowledge ofparents of pre-school children and their actual food purchase and preparation behaviour.Design/methodology/approach - Two separate qualitative data collection exercises wereconducted, an exploratory focus group study in the UK and a projective technique study in Australia.Findings - The UK study found that, despite believing that vegetables were good for children'shealth, mothers also perceived that it was extremely difficult to encourage children to eat them. Theresults of Australian study suggest that the purchase of unhealthy "treats" or "bribes" is explainedthrough the concept of "expediency" whereas what this study …

The Housing And Support Needs Of People With An Intellectual Disability Into Older Age, Kelly Shaw, Colleen Cartwright, Jocelyn Craig

Professor Colleen M Cartwright

Background: People with intellectual disabilities (IDs) are growing older as a population cohort. Many live at home with family members who are their carers but who are also becoming older and less able to provide care. The housing and support preferences of people with IDs and their carers into older age are poorly characterised in the literature. Methods: Focus groups and individual interviews were conducted with 15 people with IDs who work in supported employment and with 10 family members who care for adults with IDs. Data were thematically analysed independently by two researchers. Results: The major themes that emerged …

Cross-Cultural Comparison Of Sensory Behaviors In Children With Autism., Kristina G Caron, Roseann C Schaaf, Teal W. Benevides, Eynat Gal

Department of Occupational Therapy Faculty Papers

Parents of children with autism frequently report that their children exhibit unusual responses to sensory experiences. Little research is available, however, describing how parents' and children's culture and environment might influence parents' reports of their children's behaviors. This study compared the frequency of parent-reported responses to sensory experiences in children from two countries-Israel and the United States. We administered the Short Sensory Profile to primary caregivers of children with autism spectrum disorders (ASD) and typically developing peers. Results indicate that Israeli parents reported unusual responses to sensory experiences less frequently than U.S. parents for both ASD and typically developing children. …

Evaluating The Effectiveness Of A Workshop/Support Group For Parents Raising Children With Type 1 Diabetes, Christina Marie Yazzie

Theses and Dissertations

The purpose of this study was to evaluate the effectiveness of a workshop/support group for parents raising children with type 1 diabetes mellitus (T1DM). Diagnosis of a chronic disease in a child generally arouses acute anxiety and stress in parents. Parental stress when raising a child with type 1 diabetes is often centered on worry about their child's health and parents' ability to maintain the care activities needed by these children. Parents are the primary caregivers of children with Type 1 diabetes, and the effect of stress on parents can impact the health of both children and parents. The present …

The Effects Of An Education Intervention Program For Juvenile Drug Abusers And Their Parents, Donald Iverson, Stephen Jurs, Lawrence Johnson, Rita Rohen

Don C. Iverson

The Juvenile Intervention Program represents an attempt to intervene in the development of juvenile drug dependence. The program involves the early identification of juvenile drug abusers followed by the recruitment of the juveniles and their parents into the program. The program utilizes the principles of family involvement and peer pressure throughout the program, while the basis of the program involves the education of the participants in such areas as family architecture, family communication patterns and drug knowledge.

The Association Between Job Demands/Control And Health In Employed Parents: The Mediating Role Of Work-To-Family Interference And Enhancement, Christopher Magee, Natalie Stefanic, Peter Caputi, Donald Iverson

Don C. Iverson

"This paper examined whether work-to-family interference (WFI) and work-to-family enhancement (WFE) mediated the association between job demands/control and self-reported mental and physical health. Data were from the Household, Income and Labor Dynamics in Australia survey and included 1,404 Australian adults aged 18-64 years at baseline; 820 participants provided data at three time points (baseline, 12-month follow-up, and 24-month follow-up). Self-report questionnaires assessed mental and physical health, WFI and WFE, and job demands/control. Mediation analyzes performed on the longitudinal data indicated that WFI mediated the relationships between job demands/control and self-reported mental and physical health. The findings have implications for improving …

End Of Life Decisions In The Nicu: The Value Of New Life And The Degree To Which Religion Plays A Role In These Ethical Decisions, Maria Battaglia

Honors Theses

This thesis explored the role of religion as a social variable affecting end of life decisions in the NICU. The existing literature has studied many factors that are a part of the tough ethical decisions made in the NICU with some reference to religion. However, there is not adequate attention given to religion specifically. In order to further expand upon religion, various members composing the medical teams of two hospitals were interviewed. The interviewees included neonatologists, nurses, chaplains, and a social worker. This thesis found that religion is a variable that matters more than the existing literature has claimed. Often, …

Parental Involvement In Speech-Language Intervention, Victoria Beech Finley

Honors Theses

This thesis examines how parents of children who are successful in therapy are involved, from the parent’s perspective. Literature on parental involvement in therapy is limited, especially findings from the parent’s perspective. This thesis follows a phenomenological qualitative design. The investigator interviewed three mothers regarding their participation. The investigator then transcribed the interviews and cyclically analyzed them to find salient themes across all three. There were two shared themes, acceptance and emotions. It is hoped that this study will provide insight for other parents so that they can contribute to their children’s success in speech-language intervention.

Building The Foundation For The Family Options Project, Joanne Nicholson, Kathleen Biebel, Valerie Williams, Karen Albert

Joanne Nicholson

This article describes how the long-standing partnership between Employment Options, Inc., a psychosocial rehabilitation agency in Marlborough, MA, and the University of Massachusetts Medical School's (UMMS) Center for Mental Health Services Research led to the development of the Family Options program.

Why Not Support(Ed) Parenting, Joanne Nicholson, William Deveney

Joanne Nicholson

No abstract provided.

A Survey Of Programs For Parents With Mental Illness And Their Families: Identifying Common Elements To Build The Evidence Base, Beth Hinden, Kathleen Biebel, Joanne Nicholson, Alexis Henry, Judith Katz-Leavy

Joanne Nicholson

Little is known about the effectiveness of interventions for families living with parental mental illness. Existing interventions offer information about successfully implemented treatments, which may demonstrate effectiveness in research. In the current study, directors of programs for parents with mental illness and their families were interviewed. Qualitative analyses revealed noteworthy similarities with respect to target population; funding; community context; agency context; mission, theoretical orientation, and assumptions; locus of care and essential services; desired outcomes; and moderators. Program similarities were identified to provide parameters for research, and to contribute to the development of testable hypotheses. Family-centered, strengths-based approaches were identified across …

Outcomes Of Father Involvement In Pregnancy And Birth, Joanne Nicholson, Nancy Gist, Robert Klein, Kay Standley

Joanne Nicholson

No abstract provided.

A Qualitative Study Of Programs For Parents With Serious Mental Illness And Their Children: Building Practice-Based Evidence, Joanne Nicholson, Beth Hinden, Kathleen Biebel, Alexis Henry, Judith Katz-Leavy

Joanne Nicholson

The rationale for the development of effective programs for parents with serious mental illness and their children is compelling. Using qualitative methods and a grounded theory approach with data obtained in site visits, seven existing programs for parents with mental illness and their children in the United States are described and compared across core components: target population, theory and assumptions, funding, community and agency contexts, essential services and intervention strategies, moderators, and outcomes. The diversity across programs is strongly complemented by shared characteristics, the identification of which provides the foundation for future testing and the development of an evidence base. …

Achieving The Goal Of Evidence-Based Psychiatric Rehabilitation Practices For Mothers With Mental Illnesses, Joanne Nicholson, Alexis Henry

Joanne Nicholson

There is a growing commitment to evidence-based practices in mental health. There is no well-articulated evidence base for interventions for mothers with mental illnesses. Parenthood is common among women with mental illnesses. Women themselves report motherhood is an important role. The risks of parental mental illness to children have been demonstrated; the challenges that motherhood brings to people with mental illnesses have been described. Because outcomes for both children and adults are multiply determined, there are many intervention opportunities. Recommendations for intervention are drawn from a focus group study and from the existing literature on parent training and support, exemplary …

Programs For Families With Parental Mental Illness: Results Of A Us National Survey, Joanne Nicholson, Beth Hinden, Kathleen Biebel, Alexis Henry, Lawrence Stier

Joanne Nicholson

Citation: Nicholson, J., Hinden, B., Biebel, K., Henry, A., & Stier, L. (2004). Programs for families with parental mental illness. Visions: British Columbia Mental Health and Addictions Journal, 2(2), 27-29. Available at: http://www.heretohelp.bc.ca/publications/visions/parenting. Summary: Survey of programs in the U.S. for parents with mental illness.

A Multi-Disciplinary, Whole-Of-Family Approach To Supporting Parents With Mental Illness, Joanne Nicholson

Joanne Nicholson

Summary: Family members are likely to have multiple and overlapping needs & roles – individuals with mental illness, carers & siblings. There are many opportunities & strategies for intervention. The best care requires the engagement of multiple stakeholders working in partnership. Citation: Nicholson, J. (2010, November). A multi-disciplinary, whole-of-family approach to supporting parents with mental illness. Presented as a plenary at the Developing Strength and Resilience in Children conference of Voksne for Barn, Oslo, Norway.

Mental Illness: Understanding The Impact On Families And How To Help, Joanne Nicholson

Joanne Nicholson

Abstract: Family is the context where mental health recovery takes place. Mental health services need to take a whole-of-family approach when working with people with a mental illness. Supporting people with a mental illness in their family roles actually improved the mental health outcomes of people participating in their programs. Citation: Nicholson, J. (2010, May). Mental illness: Understanding the impact on families and how to help. Presented as the 12th Annual Bruce Woodcock Memorial Lecture, Mental Illness Fellowship Victoria, Melbourne, Victoria, Australia.

The Responsiveness Of State Mental Health Authorities To Parents With Mental Illness, Kathleen Biebel, Joanne Nicholson, Valerie Williams, Beth Hinden

Joanne Nicholson

The majority of adults with serious mental illness living in the community are parents, many of whom may be receiving services from State Mental Health Authorities (SMHA). Innovative intervention approaches are available to improve outcomes for these parents and their children. Analyses of SMHA and state-level data, as well as qualitative interviews of administrators, service providers, and consumers, underscore the importance of organizational structure and philosophy, an advocacy presence, and available funding to SMHA efforts on behalf of parents and their families.

Parenting Well When You're Depressed: A Complete Resource For Maintaining A Healthy Family, Joanne Nicholson, Alexis Henry, Jonathan Clayfield, Susan Phillips

Joanne Nicholson

Citation: Nicholson, J., Henry, A.D., Clayfield, J. & Phillips, S. (2001) Parenting well when you’re depressed: A complete resource for maintaining a healthy family. Oakland, CA: New Harbinger Publications, Inc. ISBN 1572242515, 9781572242517. This guide, based on more than ten years of study of depressed parents and their families, offers strategies, action plans, and resources to help readers provide for their children's healthy development.

The Prevalence Of Parenthood In Adults With Mental Illness: Implications For State And Federal Policymakers, Programs, And Providers, Joanne Nicholson, Kathleen Biebel, Judith Katz-Leavy, Valerie Williams

Joanne Nicholson

Citation: Nicholson, J., Biebel, K., Williams, V.F., & Katz-Leavy, J. (2004) Prevalence of Parenthood in Adults with Mental Illness: Implications for State and Federal Policy, Programs, and Providers. In Center for Mental Health Services. Mental Health, United States, 2002. Manderscheid, R.W., & Henderson, M.J., eds. DHHS Pub No. (SMA) 3938. Rockville, Maryland: Substance Abuse and Mental Health Services Administration, Chapter 10, pp. 120-137.

Frontline Reports: The Clubhouse Family Legal Support Project For Parents With Mental Illness, Kate Nemens, Joanne Nicholson

Joanne Nicholson

No abstract provided.

Parents With Severe Mental Illness And Their Children: The Need For Human Services Integration, Andrea Blanch, Joanne Nicholson, J. Purcell

Joanne Nicholson

Citation: Blanch, A., Nicholson, J. & Purcell, J. (1998) Parents with severe mental illness and their children: The need for human services integration. In Levin, B.L., Blanch, A.K. and Jennings, A. (Eds.) Women’s mental health services: A public health perspective. Thousand Oaks, CA: Sage Publications, Inc. ISBN 076190509X, 9780761905097.

Supporting Parents: Multi-Needs And The Need For Multi-Institutions’ Coordination Of Supports, Joanne Nicholson

Joanne Nicholson

Summary: Family members are likely to have multiple and overlapping needs & roles – individuals with mental illness, carers & siblings. There are many opportunities & strategies for intervention. The best care requires the engagement of multiple stakeholders working in partnership.

Citation: Nicholson, J. (2010, May). Supporting parents: multi-needs and the need for multi-institutions coordination of supports. Presented as a keynote at the Conference on Ondersteuning Ouders met Psychiasche Problemen,The Hague, The Netherlands.

Parenting With A Mental Illness. A Radio Interview For Abc Radio National, Australia Public Radio (Audio File), Joanne Nicholson

Joanne Nicholson

Interview (mp3 audio file, 9.8 MB) by Dr. Joanne Nicholson with Richard Aedy, host and producer, “Parenting with a Mental Illness” on Life Matters, ABC Radio National, Australia public radio, May 25, 2010. Nicholson says that keeping families intact benefits both the family as a whole, and the ill parent's recovery. She argues too many health professionals make treatment plans without considering the family context. Citation: Nicholson, J. Interview with Richard Aedy, host and producer, “Parenting with a Mental Illness” on Life Matters, ABC Radio National, Australia public radio. May 25, 2010. Available from: http://www.abc.net.au/rn/lifematters/stories/2010/2906312.htm.

Helping Families— Shifting The Emphasis, Joanne Nicholson

Joanne Nicholson

Abstract: Family members are likely to have multiple and overlapping needs & roles – individuals with mental illness and carers. There are many opportunities & strategies for intervention. The best care requires the engagement of multiple stakeholders. Citation: Nicholson, J. (2010, May). Helping families – Shifting the emphasis. Presented as a keynote address at the Annual Corporate Breakfast with the Lord Mayor, Mental Illness Fellowship Victoria, Melbourne, Victoria, Australia.

Supporting Parents With Mental Health Needs In Systems Of Care, Barbara Friesen, Judith Katz-Leavy, Joanne Nicholson

Joanne Nicholson

Summary: Community-based systems of care (SOCs) must address both the needs of parents with mental illness and the needs of their children. Learning more about the challenges faced by SOCs in this area, and the strategies they implement to overcome them, provides insights with implications for the broader field. This project was intended to learn more about efforts to assess parents’ mental health needs, effectively engage and support them, and improve system coordination and access to services to inform service delivery and system reform, especially for those involved in both child welfare and mental health. This report presents information gathered …

Supporting Parents With Psychiatric Disabilities And Promoting Recovery: An International Challenge, Peter Van Der Ende, Joanne Nicholson

Joanne Nicholson

Introduction: Parenting is a significant life role for adults with psychiatric disabilities. Not only is success in this role a normal life goal for many, but functioning as well as possible as parents would seem to be intimately related to the recovery process and successful functioning in other major life domains. Research on the prevalence and needs of parents with psychiatric disabilities in two countries, the U.S. and The Netherlands, provides the framework for developing and testing interventions. Essential program components include supports for parents in meeting their children’s needs as well as managing their own. Research Question: What are …

Responding To Depression In Parents, Joanne Nicholson, Jonathan Clayfield

Joanne Nicholson

Pediatric professionals may naturally view themselves as gatekeepers or facilitators of access to mental health services for children, but may not see themselves as the first line of "defense" for parents with mental health issues. However, about two thirds of women who meet criteria for affective disorders, and slightly more than half of the men who do, are parents. Given that the average age of onset for affective disorders is several years after the birth of first children, parental depression may initially come to the attention of pediatric providers, the most likely professionals with whom parents have contact prior to …

Use Of Child Custody As Leverage To Improve Treatment Adherence, Joanne Nicholson

Joanne Nicholson

No abstract provided.