Children and Young People's Response to Parental Illness

A Handbook of Assessment and Practice

David Morley, Xiaoming Li, Crispin Jenkinson, David Morley, Xiaoming Li, Crispin Jenkinson

• Verlag: CRC Press
• Jahr: 2016
• ISBN:
  9781315349688
• Auflage: 1
• Thema: Medicina
• Thema: Psichiatria e salute mentale

Assessment of the impact of parental illness has gathered significant momentum over recent years. This book provides an up-to-date guide, for a variety of professionals, on how a range of conditions might impact upon children and young people. Each chapter provides an overview of current literature, an evaluation of relevant interventions, an 'in practice' section that provides guidance for readers in terms of best practice, and future research directions. Although the primary focus of the book is directed at children's and young people's response to their parent's condition, the challenges of parenting are also frequently highlighted. Additionally, the text provides an overview of measurement issues when investigating children's and young people's response to parental illness.

CHAPTER 1

Children’s and young people’s response to parental illness: introduction and overview

David Morley and Crispin Jenkinson

The past few decades have seen a fundamental change in the way that the impact of illness is assessed. The evaluation of healthcare interventions now increasingly includes systematic attempts to incorporate patient-based reports of outcome. Patient-reported outcomes have become central to the measurement of health and well-being (Black and Jenkinson, 2009). This is in stark contrast to only a few decades ago, when assessments were based primarily on clinical judgements and so-called ‘objective’ assessments of disease progression in terms of mortality and morbidity. Furthermore, there is increasing recognition that the consequences of illness are not solely confined to those diagnosed with a given condition (Firth, 2006). The burgeoning literature related to the carers of affected individuals is a testament to this. The importance of identifying and meeting the needs of carers, particularly in light of an ageing population, is now regarded as essential in achieving optimal goals for healthcare and healthy living (Morley et al., 2012). Historically, however, the effects on the offspring of those diagnosed with debilitating, sometimes life-threatening, conditions have been less well recognised. Without question, this has begun to change, and investigations into children’s and young people’s responses to parental illness have gained significant momentum over the past two to three decades.

Current research highlights the multifaceted response of children to parental illness. Many of these responses have the potential to be challenging in terms of, for example, children’s emotional and physical well-being, their peer relationships and hopes for the future. What is also clear is that not all responses are negative and that positive outcomes can emerge. Many children adapt positively to parental illness, and this can afford the opportunity for personal growth in terms of, for example, the development of independence and empathy. Some such responses may be specific to a particular condition; others may be more generic when children are confronted with adapting to their parent’s health status.

This book aims to expand on the issues raised above and provide an up-to-date account of how a broad and diverse range of parental conditions might affect children’s and young people’s well-being. It should be noted from the outset that the focus is not on young carers as classically defined, where children provide excessive or inappropriate levels of care (ADASS et al., 2012). Rather, the emphasis is on children and young people, most likely not engaged in a primary caregiving role, but nevertheless experiencing a range of challenges as a consequence of their parent’s condition. The term ‘child’ throughout this text is intentionally broad and is used as an overarching term to refer to children of all ages, be they very young, in their adolescent years or, indeed, adult children of affected parents.

The text commences with a number of dedicated chapters that focus on a single-parental condition where a sufficient and coherent body of evidence has emerged. These conditions include multiple sclerosis, Parkinson’s disease, acquired brain injury, depression, alcoholism, cancer, and HIV/AIDS. Each of these chapters is structured to provide an overview of the literature, an evaluation of any relevant interventions and an ‘in practice’ section that provides some basic guidance for readers in terms of best practice when addressing the impact of a given condition. Finally, each chapter makes recommendations for future research in the given parental condition. What is notable about many of these conditions is their rapidly changing nature due to advances in medical science. Indeed, while life expectancy has increased throughout much of the world, so has the number of people with long-term conditions. Conditions that were until relatively recently regarded as experienced in the last years of life have now become illnesses that are experienced over many years and, in some cases, decades of life. For example, 50% of people diagnosed with cancer now live in excess of 10 years post-diagnosis (Cancer Research UK, 2011) and, as a result of antiretroviral treatment, HIV/AIDS is now considered a controllable, treatable chronic condition (Drewes et al., 2013). Such profound changes in disease trajectories are likely to have significant implications for children’s adjustment. Rather than dealing with impending death and, ultimately, the loss of a parent, children now often face a very different set of challenges as treatment regimens change the nature of diseases from terminal to chronic, or even curable. Research has tended to highlight these medical breakthroughs, but they bring with them challenges, both for those with long-term illnesses and for those who live alongside them.

As the chapters clearly demonstrate, not all parental conditions have received the attention that their potential impact on children might warrant. Consequently, a further chapter focusing on such conditions, where initial but limited research has been conducted, is also presented. These include amyotrophic lateral sclerosis/motor neurone disease, arthritis, chronic back pain, chronic pain, epilepsy, inflammatory bowel disease, leprosy, obsessive-compulsive disorder, schizophrenia and spinal cord injury. Broader issues are subsequently introduced, including the issue of parental disclosure, with specific reference to HIV/AIDS. What is clear from the current literature is that how and when children are informed of the parental condition can have a significant bearing on their consequent adjustment (Qiao et al., 2013). A chapter advocating a family-centred approach to parental illness is also presented. Increasingly, family-centred approaches are recommended in a range of clinical environments and conditions (Kuo et al., 2012), and such an approach makes intuitive sense where parental illness enters the family unit. The chapter also introduces a new assessment tool, the Screening Instrument for Adolescents of Parents with Chronic Medical Condition, which has the potential for significant uptake in the field. The book closes with a chapter focusing on issues of assessing how parental illness impacts upon children. The principles of sound scientific measurement are discussed, along with a range of considerations in the development and administration of measurement tools. The final chapter includes an appendix with a brief outline of some commonly used measures that have been incorporated in the assessment of parental illness.

This book highlights the very different demands placed on children that can be caused by a variety of conditions and underlines the importance of research into this often neglected aspect of illness. The intention is not only to bring together research in the area and heighten awareness of the potential impact of parental illness on children, but also to stimulate further research efforts. Although the primary focus is children’s responses to their parent’s condition, the challenges of parenting, for both the affected and unaffected parent, are also frequently highlighted. Without question, parental illness is very much a ‘family affair’ and what will become apparent is that no individual member of the family unit should be viewed in isolation.

REFERENCES

ADASS, ADCS and The Children’s Society. (2012). Working together to support young carers and their families. www.childrenssociety.org.uk/sites/default/files/tcs/report_hidden-from-view_young-carers_final.pdf (accessed November 2015).

Black, N., Jenkinson, C. (2009). Measuring patients’ experiences and outcomes. British Medical Journal, 339, 202–205.

Cancer Research UK. (2011). www.cancerresearchuk.org/health-professional/cancer-statistics (accessed November 2015).

Drewes, J., Gusy, B., Rüden, Uv. (2013). More than 20 years of research into the quality of life of people with HIV and AIDS: A descriptive review of study characteristics and methodological approaches of published empirical studies. Journal of the International Association of Providers of AIDS Care, 12(1), 18–22.

Firth, P. (2006). Patients and their families. Recent Results in Cancer Research, 168, 61–71.

Kuo, D.Z., Houtrow, A.J., Arango, P., Kuhlthau, K.A., Simmons, J.M., Neff, J.M. (2012). Family-centered care: Current applications and future directions in pediatric health care. Maternal and Child Health Journal, 16(2), 297–305.

Morley, D., Dummett, S., Peters, M., Kelly, L., Hewitson, P., Dawson, J., Fitzpatrick, R., Jenkinson, C. (2012). Factors influencing quality of life in caregivers of people with Parkinson’s disease and implications for clinical guidelines. Parkinson’s Disease, 2012, 190901.

Qiao, S., Li, X., Stanton, B. (2013). Disclosure of parental HIV infection to children: A systematic review of global literature. AIDS Behavior, 17, 369–389.

CHAPTER 2

Parental multiple sclerosis

Kenneth Pakenham

INTRODUCTION

Multiple sclerosis (MS) is a chronic degenerative disease of the central nervous system and is the most common neurological disorder among young adults in the Western world (Leary et al., 2005). The aetiology of MS remains largely unknown, clinical symptoms vary widely (e.g. cognitive impairment, pain, sexual dysfunction, fatigue, loss of bowel or bladder control, mobility and visual impairments, and emotional changes). There is currently no cure and often only minimal symptomatic relief (Rao et al., 1992). MS is a complex illness with an unpredictable course that has profound physical and psychosocial impact on most, if not all, areas of a person’s life. Not surprisingly, people with MS have a higher prevalence of emotional disorders relative to other patient groups with comparable degrees of physical disability, and report lower quality of life than community comparison groups (Pakenham, 2012). The onset of MS typically occurs between 20 and 40 years of age, a time of life often associated with establishing a family. MS also occurs in women more frequently than in men, and mothers commonly take on a greater role in caring for children. MS can cause impairment and disruption in many areas of family functioning, particularly parenting (Pakenham et al., 1997; Power, 1985). Understandably, many parents with MS are concerned about the impact of their illness on their children and report difficulties associated with parenting (e.g. Braham et al., 1975). Data suggests that some of these children are ‘at risk’ and that parents with MS and their children require targeted support.

THE CHALLENGES OF PARENTING WITH MS

Parenting tasks and roles can be disrupted by MS relapses and symptoms, particularly mood disturbance, cognitive impairment, fatigue and mobility problems. For example, mothers with MS and their children (6–20 years of age) have reported lower maternal physical affection during a relapse than when symptoms were stable (Deatrick et al., 1998). Limited mobility can cause difficulties in transporting children and participating in family activities. Fatigue is one of the most commonly reported MS symptoms (Pakenham, 2012). Given the energy demands of parenting, chronic fatigue can greatly limit child-rearing activities (Pakenham et al., 2012). Other parenting challenges include relinquishing parental tasks (e.g. meal preparation) to other family members, managing perceived stigma associated with being a ‘disabled parent’, being dependent on children and finding family activities that can accommodate MS-related disabilities (Kikuchi, 1987; Pakenham et al., 2012). The loss of full and consistent engagement in family activities is one of the most common and disconcerting difficulties reported by parents with MS (Pakenham et al., 2012). External stressors such as financial difficulties and lack of formal support can compound difficulties related to the disabilities produced by MS.

Given the parenting limitations that can occur with MS, in dual-parent households the ‘healthy’ parent often takes on additional parenting responsibilities. Both the parent with MS and the parent without MS offer important and unique parenting contributions (Steck et al., 2001). However, the increased parenting workload of ‘healthy’ parents presents a range of difficulties that are similar to those reported by the parent with MS (Pakenham et al., 2012).

Despite the challenges of parenting with MS, parents can develop compensatory strategies, access resources and strengthen family bonds that enable effective parenting. This is supported by evidence from a study of 145 parents with MS and 91 partners which found that, compared to norms, both the MS parent and the healthy partner were significantly higher in parenting efficacy, although lower in parenting satisfaction (Sturgess, 2012). In addition, healthy partners reported higher family cohesion and lower family conflict compared to norms. Both parents seek out and utilise an array of resources within the nuclear and extended family, formalised services and the broader community (Pakenham et al., 2012).

One of the most common family-level coping strategies for dealing with parental illness is the redistribution of roles among family members. Not only does the ‘healthy’ parent assume extra duties and tasks, but also the children. Power (1985) found that families with a parent with MS that exhibited a willingness to share household and caregiving responsibilities were more cohesive and functioned better than families in which all members did not contribute equally. While it might be expected that family members will work together and take on extra family responsibilities when a parent is ill, the extent to which children should assume more adult responsibilities and tasks is controversial. In single-parent and economically disadvantaged families, children are more likely to take on higher levels of family responsibilities because of the absence of another parent and a lack of financial resources to access services.

YOUTH CAREGIVING

Children of parents with MS often take on a range of family caregiving tasks and responsibilities. Although a degree of caregiving during childhood is normative and is in fact valued and encouraged as part of the developmental process, the level of caregiving undertaken by children of parents with a serious medical condition is sometimes exaggerated and may not be congruent with their age and level of maturity. This is particularly the case for some children of a parent with MS. Several studies show that on average these children undertake higher levels of family responsibilities and caregiving tasks than children of ‘healthy’ parents (Pakenham and Bursnall, 2006; Yahav et al., 2005).

Some researchers have conceptualised the caring roles among children in the context of parental illness as ‘parentification’ or a pathological role reversal (Chase, 1999). Although extensive role reversal may occur in extreme cases, for most families caring does not mean children internalise the same sense of accountability that parents have for their children’s welfare. Parent-child relationships are reciprocal and interdependent by nature, and regardless of some role adaptation, children report viewing their parents as parents. Youth caregiving may be more accurately conceptualised as a form of functional adaptive coping in the context of adversity rather than a pathological role reversal.

The caregiving tasks undertaken by children of a parent with MS have been assessed by the Youth Activities of Caregiving Scale (YACS; Ireland and Pakenham, 2010), and have been shown to fall into four broad categories: instrumental (e.g. paying bills and managing money), social-emotional (e.g. keeping the parent happy, safe and occupied), personal-intimate (e.g. assisting with toileting and dressing) and domestic-household care (e.g. preparing meals and shopping) (Pakenham and Cox, 2012a). These represent the core domains of young ...