Helping Children and Families Cope with Parental Illness

A Clinician's Guide

Maureen Davey, Karni Kissil, Laura Lynch

• Publisher: Routledge
• Year: 2016
• ISBN:
  9781317584070
• Edition: 1
• Topic: Psychologie
• Subtopic: Psychische Gesundheit in der Psychologie

When a parent or parental figure is diagnosed with an illness, the family unit changes and clinical providers should consider using a family-centered approach to care, and not just focus on the patient coping with the illness. Helping Children and Families Cope with Parental Illness describes theoretical frameworks, common parental illnesses and their course, family assessment tools, and evidence-supported family intervention programs that have the potential to significantly reduce negative psychosocial outcomes for families and promote resilience. Most interventions described are culturally sensitive, for use with diverse populations in diverse practice settings, and were developed for two-parent, single-parent, and blended families.

Part I

Introduction and Theoretical Frameworks

Chapter 1

Introduction

Maureen Davey, Karni Kissil, and Laura Lynch

We are passionate about this book because of our own experiences with parental illness, our clinical work, and clinical research with parents and their families. As children, we were each significantly impacted by parental illness. Two of us (M.D. and K.K.) lost a mother to cancer when we were school-age children. One of us (L.L.) experienced a father struggling to manage type 1 diabetes. Reflecting back on our experiences as adults and providers, we realized how family-centered approaches to medical care could have made our parents’ and families’ struggles easier and reduced feelings of isolation and distress. We each remember feeling invisible and overlooked by healthcare providers when our parents were coping with their chronic (diabetes) or life-threatening (cancer) illnesses. Experiences with parental illness in our own families inspired us to study and develop culturally sensitive prevention programs to help other families like ours. Thus, our shared desire to help providers improve the lives of the millions of children currently coping with parental illness is what motivated us to write a book to help providers better meet the needs of these vulnerable families.

This book was written for mental healthcare providers (e.g., behavioral healthcare providers, clinical psychologists, social workers, family therapists, counseling psychologists, nurses) who work with families coping with parental illness in diverse practice settings (e.g., primary care, specialty care, community mental health, private practice). We describe theoretical frameworks (attachment theory: Bowlby, 1969/1982, family systems illness model: Rolland, 1999, 2005), seven types of prevalent parental illnesses and their impact on parents and their children (e.g., depression, cancer, HIV, multiple sclerosis, lupus, diabetes, cardiovascular diseases), experiences of grandparents raising grandchildren, psychosocial and family assessment tools, general clinical guidelines to help families cope with parental illness, evidence-supported prevention programs that facilitate family resilience, parental death and grief interventions, and ethical considerations. Additionally, we consider the importance of adapting interventions so they are more culturally relevant (e.g., tailored for different cultures, ethnicities, and races) and can be used in diverse practice settings (e.g., primary care, specialty medical clinics, outpatient mental health clinics, and private practice settings).

History of Helping Families Cope with Parental Illness

From the late 1950s until the mid-1980s, children living with ill parents were rarely mentioned in the literature, except noting that these children might have more responsibilities at home (e.g., Arnaud, 1959; Romano, 1976). At this time, most clinical providers and researchers focused on patients’ and spouses’ needs, rather than on their children at home. In the late 1980s, clinical researchers began focusing on specific parental illnesses with regard to how they impact children, adolescents, and parents. Yet despite this focus on children and adolescents in the last 30 years, most medical clinics (primary and specialty) and mental health and private practice clinics are not routinely assessing and attending to the needs of children who have ill parents, and they are not providing culturally sensitive, evidence-supported prevention programs. More often, peer or parent-only cognitive behavioral or psychoeducational approaches are offered to families in lieu of prevention programs that are more interactive and focus on parent–child attachment and improved parent–child communication (Campbell, 2003; Shields, Finley, & Chawla, 2012).

Families are networks of reciprocal relationships. When a parent is diagnosed with an illness like depression, cancer, HIV, or diabetes, although the course of the particular illness will differ, it affects the family system, for example, marital relationships, parenting practices, family roles and routines, children and adolescents, household management, work responsibilities, and social relationships (e.g., Aldridge & Becker, 1999; Masten, 2001; Rolland, 1994, 1999). When a parent or primary caregiver (e.g., grandparents who are raising grandchildren) is ill, depressive mood and distress may be experienced by both the ill parent and his or her partner or spouse (Armistead, Klein, & Forehand, 1995; Armsden & Lewis, 1993; Burton, 1992). Noteworthy, there are more symptoms of distress among single parents with lower incomes because they tend to have less family support (Cross, 1989; Evans & Kim, 2013; Sue, 2003; Whaley & Davis, 2007). Additionally, many parents experience impaired parenting because of the illness, side effects of treatment, and understandable emotional distress (Beardslee, Gladstone, Wright, & Cooper, 2003; Beardslee, Versage, & Gladstone, 1998). Consequently, some parents coping with an illness are less psychologically available to their children, have poorer communication and supervision, provide inconsistent discipline, experience more irritability, and use more coercive parenting practices. Parental illness, whether physical or mental, can stress even the strongest of families.

Impact of Parental Illness

Parental illnesses are common and can affect all levels of the family system: patient, spouse/partner, and their children. Parental illnesses can also cause depressive mood and distress in both the afflicted parent and his or her partner or spouse (Compas, Worsham, Ey, & Howell, 1996). In turn, this can result in impaired parenting as described previously (Beardslee et al., 1998, 2003). This impairment of parenting has been linked to poorer adaptability among children, for example, behavioral, social, and self-esteem problems (Armistead et al., 1995; Lewis, 2004; Pederson & Revenson, 2005; Weaver, Rowland, Alfano, & McNeel, 2010). Clinical researchers have reported that children may experience physical symptoms, family conflict, and less family cohesion (Bogosian, Moss-Morris, Hadwin, 2010; Pakenham, Bursnall, Chiu, Cannon, & Okochi, 2006). Older school-age children report that their lives are often complicated by their parent’s diagnosis and treatment. Clinical researchers suggest that among children of all ages whose parents have an illness, older school-age children (ages 10 to 18) tend to report the highest levels of psychological symptoms and are at most risk for experiencing anxiety and depression (Armsden & Lewis, 1993; Beardslee et al., 2003).

Since parental illness can have a profound impact on children and adolescents with regard to their development, physical and mental health, and overall well-being (Pakenham & Cox, 2012), a family-centered approach to care is needed in our healthcare system. Access to information and a range of practical and emotional support services are essential for families experiencing parental illness (Chelsa, 2010). Psychosocial support should be part of the routine practice of all healthcare providers who have direct contact with children and families.

Yet, our current healthcare system does not routinely support families, children, and adolescents when a parent has a serious, chronic, or life-threatening illness (Blank, 2012; Johnson, 2000). Many of today’s behavioral health therapists and mental healthcare providers lack training regarding how to interview, intervene, and respond to more than the ill parents who are their patients (Martire, 2005; Martire, Lustig, Schulz, Miller, & Helgeson, 2004). Families frequently describe difficulty meeting the demands of a parental illness. They may have limited financial resources, inadequate respite support, limited communication with the education and healthcare systems, and competing work and family commitments (Evans & Kim, 2013). Some families become socially isolated at a time when they most need supportive social relationships. Helping providers routinely use psychosocial assessments and family interventions at the front end and throughout treatment could help these families receive the support they need (Chelsa, 2010). We hope our book helps providers working in diverse practice settings with families who are coping with parental illness.

Audience for the Book

Designed for prevention and intervention, this book was written for two groups of professionals. The first group includes clinical supervisors who train providers (such as counselors, psychologists, nurses, physicians, social workers, marriage and family therapists) who work in medical settings, community mental health clinics, and private practice, to help them utilize a family-centered approach to care with families coping with different types of parental illnesses.

The second group includes program administrators and other decision-makers involved in developing curricula and implementation in various helping professional programs. This book can be used as a primary or supplemental textbook for graduate classes dedicated to the clinical preparation and development of clinicians such as clinical practicum, medical family therapy, or health psychology courses. It is applicable across mental health and physical health disciplines including psychology, sociology, nursing, public health, social work, and medicine.

Overview of Book Chapters

This book is divided into three parts. Part I continues with Chapter 2, “Maintaining a Family Focus: Utilizing Attachment Theory and the Family Systems Illness Model,” in which we review two frameworks, attachment theory (Bowlby, 1969/1982) and the family systems illness model (Rolland, 1999), that guided the development of this book. Bowlby (1969/1982) emphasized the importance of accessibility and responsiveness between children and adolescents and their primary caregivers, which has been linked to better social and emotional adjustment; we believe this can help shield children and adolescents who are coping with an ill parent. Attachment theory assumes that a child’s sense of security in life depends on parents being available and protective. Although attachment is essential in infancy, it is also important throughout the life cycle (Bowlby, 1969/1982). Parental illness is a stressful life event that can lead to family instability and parental depression, which are associated with less parental supervision and sometimes more coercive parenting. The strength of the parent–child attachment bond can shield children from the negative effects of coping with a parent’s illness. Secure attachments can help to protect children so that when adversity is present, they can better cope and adapt.

Rolland’s family systems illness model (1999, 2005) provides a systemic framework for working with families who are facing any chronic illness. Rolland’s model acknowledges the effect of the “psychosocial types of illness” (Rolland, 1999, p. 244), which refers to categorizing and understanding the impact of the illness based on its: (1) type of onset, (2) type of course it takes, (3) outcome of an illness, (4) how much incapacitation the illness causes, and (5) level of uncertainty related to the illness. We applied this model to each of the illnesses described in Part II of our book to provide a systemic framework for identifying clinically relevant and culturally sensitive clinical interventions.

Part II, Parental Illnesses, consists of eight chapters describing seven different types of parental illnesses (Chapters 3 to 9) and the experiences of grandparents coping with illness and raising grandchildren (Chapter 10). Chapter 3 through 9 are all organized in the following way: (1) prevalence, prognosis, and associated medical outcomes, as well as a description of illness according to Rolland’s (1999) categorization; (2) effects of the illness on parents and children; (3) cultural considerations and consideration of cultural differences and presentations based on the clinical context (e.g., primary care, specialty clinics, outpatient mental health, private practice), age of child, race, ethnicity, family structure, which parent or grandparent is ill, and class; (4) clinical vignette illustrating how a family coping with the specific parental illness could present; and (5) additional resources. The seven illnesses reviewed in Part II are reflected in the respective chapter titles: “Parental Depression” (Chapter 3), “Parental Cancer” (Chapter 4), “Parental HIV” (Chapter 5), “Parental Multiple Sclerosis” (Chapter 6), “Parental Systemic Lupus Erythematosus” (Chapter 7), “Parental Diabetes” (Chapter 8), and “Parental Cardiovascular Diseases” (Chapter 9). We end Part II with a chapter describing the experiences of grandparents raising grandchildren (Chapter 10). We included this chapter because there has been a steady increase in the number of grandparent-headed households in the United States since the 1990s. Unfortunately, grandparents who have the primary responsibility of raising their grandchildren tend to have poorer self-reported mental health outcomes, including experiencing greater parenting stresses, depression, family strain, and anxiety compared to those grandparents not serving in this capacity. This is particularly so for those of lower socioeconomic status (SES) who tend to have fewer material resources and poorer networks of social support (Burton, 1992).

Part III, Interventions and Clinical Considerations, includes five chapters. In Chapter 11, “Needs Assessments and Clinical Tools,” we review valid and reliable adult, child/adolescent, and family assessment tools that can help providers utilize a family-centered approach to care. We describe the importance of doing needs assessments on adult patients to determine if they have school age children at home and if these children are struggling because of a parent’s illness. In Chapter 12, “Clinical Guidelines for Working with Parental Illness,” we review available literature and offer clear, step-by-step guidelines for effective and culturally sensitive treatment in diverse practice settings. We also describe how to help parents have more open communication about their illness, so children do not worry alone, and how parents can provide updates to children in developmentally appropriate ways. Finally, we provide tips to help parents prepare children for any hospital visits by describing in advance what a child will see and hear; debrief with children after medical visits to allay any worries, fears, or concerns; and provide other forms of communication (e.g., cards, drawings, videos) when visits are not possible while in treatment. In Chapter 13, “Evidence-Supported Treatments for Parental Illness,” we review some evidence-supported family treatment programs for depression, cancer, and HIV. We also consider the importance of culturally adapting treatments for diverse populations and becoming a culturally sensitive provider.

The purpose of this book is to help providers support families coping with parental illness. Sadly, for some families, illness will lead to the death of the ill parent. Providers working with families coping with parental illness have an important role and can help families work through both anticipatory grief before the loss and mourning after the death. In Chapter 14, “Parental Death and Grief Interventions,” we describe how children at different ages tend to grieve the loss of a parent and when grief becomes complicated. We also describe factors that can affect children’s adjustment following parental loss, and we offer interventions that can be used by professionals to facilitate healthy grieving.

In the last chapter, Chapter 15, “Ethical Considerations,” we review legal and ethical issues that could arise when working with families who are coping with parental illness. We use two case examples to illustrate issues such as collaborating with medical providers, confidentiality and informed consent, working with the family as a unit of treatment, and contacting school personnel.

This book was written for a clinical audience so it ...

Table of contents

• Cover
• Title
• Copyright
• Dedication
• Contents
• Acknowledgments
• Part I Introduction and Theoretical Frameworks
• Part II Parental Illnesses
• Part III Interventions and Clinical Considerations
• Index