Resilience across the Continuum of Care

Abstract

Who Are Carers? A carer is any individual who provides unpaid care and support to a family member or friend who has a disability, mental illness, drug and/or alcohol dependency, chronic condition, terminal illness or who is frail. Carers come from all walks of life, cultural backgrounds and age groups. For many, caring is a 24 hour-a-day job with emotional, physical and financial impacts, with implications for their participation in employment, education and community activities. Carers exist in all communities, including amongst Aboriginal communities, those of culturally and linguistically diverse backgrounds, amongst Gay, Lesbian, Bisexual, Transgender, Intersex communities, and throughout metropolitan, regional and rural areas (Carers NSW). These broad characteristics mean that caring occurs across a wide variety of situations and care responsibilities can impact an even wider group of people. The ubiquitous nature of informal care warrants its consideration as a major social issue, as well as the potential impacts that these roles can have on carers in both short and long term contexts. Caring for a loved one is often an unseen component of people’s domestic lives. As will be outlined below, the potentially burdensome nature of care can have negative influences on carers’ wellbeing. As such, factors that can enhance the resilience of carers in the face of such adversity have been widely investigated. This being said, individual differences exist in carers’ responses to their caring responsibilities. The caring experience can therefore be argued to exist on a continuum, from the adversity in relation to stressful challenges through to prosperity in light of their caring responsibilities. By considering the experience of care as existing along this continuum, the place of resilience within people’s domestic spaces can be viewed as a mechanism towards identifying and developing supportive practices. Negative Impacts of Care A significant body of research has identified potential negative impacts of caring. Many of the most commonly cited outcomes relate to negative effects on mental health and/or psychological functioning, including stress, anxiety and depression (e.g. Baker et al.; Barlow, Cullen-Powell and Cheshire; Cheshire, Barlow and Powell; Dunn et al.; Gallagher et al.; Hastings et al.; Lach et al.; Singer; Sörensen et al.; Vitaliano, Zhang and Scanlan; Whittingham et al.; Yamada et al.). These feelings can be exacerbated when caring responsibilities become relentlessly time consuming, as demonstrated by this comment from a carer of a person with dementia: “I can’t get away from it” (O'Dwyer, Moyle and van Wyk 758). Similarly, emotional responses such as sorrow, grief, anger, frustration, and guilt can result from caring for a loved one (Heiman; Whittingham et al.). Negative emotional responses are not necessarily a direct result of caring responsibilities as such, but an understanding of the challenges faced by the person requiring their care. The following quote from the carer of a child with autism exemplifies the experience of sorrow: “It was actually the worst day of our lives, that was the day we came to terms with the fact that we had this problem” (Midence and O’Neill 280). Alongside these psychological and emotional outcomes, physical health may also be negatively impacted due to certain demands of the caring role (Lach et al.; Sörensen et al.; Vitaliano, Zhang and Scanlan). Outcomes such as these are likely to vary across individual caring circumstances, dictated by variables such as the specific tasks required of the carer, and individual personality characteristics of both the carer and the person for whom they care. Nevertheless, an awareness of these potential outcomes is particularly important when considering the place of resilience in the domestic space of individuals caring for a loved one. This conceptualisation of caring as being a burdensome task reflects many publicly held perceptions. If caring is widely viewed as compromising carers’ wellbeing, then there is likely to be an increased likelihood of carers viewing themselves as victims. This is particularly true amongst children and adolescents with caring responsibilities, since young people are most susceptible to having their personal identities shaped by others’ perceptions (Andreouli, Skovdal and Campbell). Resilience in Caring Adversity Despite the widely acknowledged potential for caring to have negative consequences for carers, it must be noted that the occurrence of these outcomes are not inevitable. In fact, much of the research that has identified increased stress amongst carers also finds that the majority cope well with the demands of their role (Barnett et al.). These carers have been considered by many researchers to demonstrate resilience (e.g. Barnett et al.; O'Dwyer, Moyle and van Wyk). The ability to respond positively despite exposure to risk or adversity is a key feature of most definitions of resilience (Luthar, Cicchetti and Becker; Masten and Obradović; Zauszniewski, Bekhet and Suresky). Resilience in this context can thus be defined as a psychological process that facilitates healthy functioning in response to intense life stressors (Johnson et al.). Since caring experiences are likely to continue for an extended period of time, resilience is likely to be necessary on an ongoing basis, rather than in response to a single traumatic event. A resilient carer is therefore one who is able to effectively and adaptively cope with extenuating pressures of caring for a loved one. This involves the presence of personal, social, familial, or institutional protective factors that enable carers to resist stress (Kaplan et al.). For example, support from health professionals, family, or community has been found to effectively support carers in coping with their role (Bekhet, Johnson and Zauszniewski; Gardiner and Iarocci; Heiman; Whittingham et al.). The benefit of support networks in assisting carers to cope in their role is widely reported in the associated research, reinforced by many examples such as the following from a carer of a person with dementia: “It’s a social thing, like, I’ve got friends on there… I find that is my escape” (O'Dwyer, Moyle and van Wyk 758). At an individual level, those who demonstrate resilient in the face of adversity demonstrate optimistic or hopeful outlooks (Ekas, Lickenbrock and Whitman; Lloyd and Hastings; Whittingham et al.), while simultaneously holding realistic expectations of the future (Rasmussen et al.; Wrosch, Miller, et al.; Wrosch, Scheier, et al.). Such attitudes are particularly significant amongst people caring for family members or friends with disabilities or illnesses. The following attitude held by a carer of a child with cerebral palsy exemplifies this optimistic outlook: “I look at the glass half full and say that “well, it’s only his walking, everything else is fine”. “So, get over [it] and deal with it” (Whittingham et al. 1451). Those who cognitively process information, rather than reacting in a highly emotion way have also been found to cope better (Bekhet, Johnson and Zauszniewski; Heiman; Monin et al.; Pennebaker, Mayne and Francis), as have those with a greater sense of self-efficacy or an internal locus of control (Bekhet, Johnson and Zauszniewski; Kuhn and Carter). However effective these coping strategies prove to be, this is unlikely to provide the full picture of caring experiences, or the place of resilience within that space. Associating resilience with adversity presumes a consensus on what constitutes adversity. Taking the typical approach to investigating resilience amongst carers risks making undue assumptions of the nature of individual carers’ experiences – namely, that caring equates to adversity. The following paragraphs will outline how this is not necessarily the case. And furthermore, that the concept of resilience still has a place in considering informal caring, regardless of whether adversity is considered to be present. Benefits of Care While a great deal of evidence suggests that caring for a loved one can be a stressful experience, research has also demonstrated the existence of positive impacts of care. In many instances, carers not only cope, but also thrive in their caring roles (Turnbull et al.). Elements such as positive relationships within caring relationships can both challenge and strengthen individuals – factors that only exist due to the specific nature of the individual caring role (Bayat; Heiman). Such positive elements of the caring experience have been reflected in the literature, illustrated by quotes such as: “In some sense, this makes our family closer” (Bayat 709). Rather than viewing carers from a perspective of victimisation (which is particularly prominent in relation to children and young people with caring responsibilities), recognising the prevalence of positive wellbeing within this population provides a more nuanced understanding of the lived experiences of all carers (Aldridge). Reported benefits of caring tend to revolve around personal relationships, particularly in reference to parents caring for their children with special needs. Reflective of the parental relationship, carers of children with disabilities or chronic illnesses generally report feelings of love, joy, optimism, strength, enjoyment, and satisfaction with their role (Barnett et al.; Heiman). The views of such carers do not reflect an attitude of coping with adversity, but rather a perspective that considers their children to be positive contributors to carers’ quality of life and the wellbeing of the wider family (King et al.). This point of view suggests an additional dimension to resilience; in particular, that resilience in the relative absence of risk factors, can cause carers to flourish within their caring role and relationships. In addition to benefits in relationships, carers may also prosper through their own personal growth and development in the course of their caring (Knight). This includes factors such as the development of life skills, maturity, purpose, social skills, a sense of responsibility, and recognition – particularly amongst young people in caring roles (Earley, Cushway and Cassidy; Early, Cushway and Cassidy; Jurkovic, Thirkield and Morrell; Skovdal and Andreouli; Stein, Rotheram-Borus and Lester; Tompkins). Recognition of the potential personal benefits of caring for a loved one is not intended to suggest that the view of carers coping with adversity is universally applicable. While it is likely that individual caring situations will have an impact on the extent to which a carer faces adversity (e.g. intensity of caring responsibilities, severity of loved one’s impairment, etc.), it is important to recognise the benefits that carers can experience alongside any challenges they may face. Circumstances that appear adversarial may not be thought of as such by those within that context. Defining resilience as an ability to cope with adversity therefore will not apply to such contexts. Rather, the concept of resilience needs to incorporate those who not only cope, but also prosper. Carers who do not perceive their role as burdensome, but identify positive outcomes, can therefore be said to demonstrate resilience though contextually different from those coping with adversity. This is not to suggest that resilience is the sole contributing factor in terms of prospering in the caring role. We must also consider individual circumstances and nuances differ between carers, those they care for, interpersonal relationships, and wider caring situations. Continuum of Care Awareness of the range of impacts that caring can have on carers leads to a recognition of the broad spectrum of experience that this role entails. Not only do caring experiences exhibit large variations in terms of practical issues (such as functional capacities, or type and severity of illness, disability, or condition), they include carers’ diverse personal responses to caring responsibilities. These responses can reflect either positive or negative dimensions, or a combination of both (Faso, Neal-Beevers and Carlson). In this way, caring experiences can be conceptualised as existing along a continuum. At one end of the spectrum, experiences align with the traditional view of caring as a struggle with and over adversity. More specifically, carers experience burdens as a result of their additional caring responsibilities, with negative outcomes likely to occur. At the other end of the spectrum, however, carers prosper in the role, experiencing significant personal benefits that would not have been possible without the caring role. This continuum makes a case for an expanded approach to stress and coping models of resilience to include positive concepts and a benefit-orientated perspective (Cassidy and Giles). In contrast to research that has argued for a progression from stress and coping models to strengths-based approaches (e.g. Glidden, Billings and Jobe; Knight), the continuum of care acknowledges the benefits of each of these theoretical positions, and thus may prove more comprehensive in attempting to understand the everyday lived experiences of carers. The framework provided by a representation of a continuum allows for the individual differences in caring situations and carers’ personal responses to be acknowledged, as well as accounting for any changes in these circumstances. Further, the experience and benefits of resilience in different contextual spheres can be identified. The flexibility afforded by such an approach is particularly important in light of individual differences in the ways carers respond to their situations, their changing caring contexts, and their subsequent individual needs (Monin et al.; Walsh; Whittingham et al.). As the caring experience can be dynamic and fluctuate in both directions along the continuum, resilience may be seen as the mechanism by which such movement occurs. In line with stress and coping models, resilience can assist carers to cope with adversarial circumstances at that end of the continuum. Similarly, it may be argued that those who prosper in their caring role exhibit characteristics of resilience. In other words, it is resilience that enables carers to cope with adversity at one end of the continuum and also to prosper at the other. Furthermore, by supporting the development of resilient characteristics, carers may be assisted in shifting their experiences along the continuum, from adversity to prosperity. This view extends upon traditional approaches reported in the stress and coping literature by contending that caring experiences may progress beyond positions of coping with adversity, to a position where caring is not understood in terms of adversity at all, but rather in terms of benefits. The individual circumstances of any carer must be taken into consideration with this framework of resilience and the continuum of care. It is unrealistic to assume that all caring situations will allow for the possibility of reaching the end point of this continuum. Carers with particularly high demands in terms of time, resources, effort, or energy may not reach a stage where they no longer consider their caring role to involve any personal burden. However, the combination of a coping and strengths-based approach suggests that there is always the possibility of moving away from perceptions of adversity and further towards an attitude of prosperity. Implications for Supportive Practice From the perspective of this continuum of care, the protective factors and coping strategies identified in previous literature provide a valuable starting point for the facilitation of resilience amongst carers. Enhancing factors such as these can assist carers to move from situations of adversity towards experiences of prosperity (Benzies and Mychasiuk). Research has suggested that carers who are less analytical in their thinking and less optimistic about their personal situations may find particular benefit from support systems that assist them in redirecting their attention towards positive aspects of their daily lives, such as the benefits of caring outlined earlier (Monin et al.). The principle of focusing on positive experiences and reframing negative thoughts is thought to benefit carers across all levels of functioning and adaptive experience (Monin et al.). While those entrenched in more burdensome mindsets are likely to experience the greatest benefit from supportive interventions, there is still merit in providing similar supports to carers who do not appear to experience the similar experiences of burden, or demonstrate greater resilience or adaptation to their situation. The dynamic view of caring situations and resilience suggested by a continuum of care incorporates benefits of stress and coping models as well as strengths-based approaches. This has implications for supportive practice in that the focus is not on determining whether or not a carer is resilient, but identifying the ways in which they already are resilient (Simon, Murphy and Smith). For carers who experience their role through a lens of adversity, resilience may need to be purposefully fostered in order to better enable them to cope and develop through the ongoing stresses of their role. For carers at the other end of the spectrum, resilience is likely to take on a substantially different meaning. Under these circumstances, caring for a loved one is not considered a burdensome task; rather, the positive impact of the role is pre-eminent. This point of view suggests that carers are resilient, not only in terms of an ability to thrive despite adversity, but in prospering to the extent that adversity is not considered to exist. The attitudes and approaches of services, support networks, and governments towards carers should remain flexible enough to acknowledge the wide variety of caring circumstances that exist. The continuum of care provides a framework through which certain aspects of caring and variations in resilience can be interpreted, as well as the type of support required by individual carers. Furthermore, it must be noted that caring circumstances can change – either gradually or suddenly – with the extent to which carers experience adversity, coping or prosperity also changing. Any attempts to provide support to carers or acknowledge their resilience should demonstrate an awareness of the potential for such fluctuation. The fundamental view that carers always have the potential to move towards more positive outcomes has the potential to reframe perceptions of carers as victims, or as simply coping, to one that embraces the personal strengths and resilience of the individual. As such, carers can be supported when faced with adversity, and to flourish beyond that position. This in turn has the potential to safeguard against any detrimental effects of adversity that may arise in the future. References Aldridge, Jo. "All Work and No Play? Understanding the Needs of Children with Caring Responsibilities." Children & Society 22.4 (2008): 253-264. Andreouli, Eleni, Morten Skovdal, and Catherine Campbell. "‘It Made Me Realise That I Am Lucky for What I Got’: British Young Carers Encountering the Realities of Their African Peers." Journal of Youth Studies  (2013): 1-16. Baker, Bruce L., et al. "Behavior Problems and Parenting Stress in Families of Three-Year-Old Children with and without Developmental Delays." American Journal on Mental Retardation 107.6 (2002): 433-44. Barlow, J. H., L. A. Cullen-Powell, and A. Cheshire. "Psychological Well-Being among Mothers of Children with Cerebral Palsy." Early Child Development and Care 176.3-4 (2006): 421-428. Barnett, Douglas, et al. "Building New Dreams: Supporting Parents' Adaptation to Their Child with Special Needs." Infants and Young Children 16.3 (2003): 184. Bayat, M. "Evidence of Resilience in Families of Children with Autism." Journal of Intellectual Disability Research 51.9 (2007): 702-714. Bekhet, Abir K., Norah L. Johnson, and Jaclene A. Zauszniewski. "Resilience in Family Members of Persons with Autism Spectrum Disorder: A Review of the Literature." Issues in Mental Health Nursing 33.10 (2012): 650-656. Benzies, Karen, and Richelle Mychasiuk. "Fostering Family Resiliency: A Review of the Key Protective Factors." Child and Family Social Work 14 (2009): 103-114. Carers NSW. Carers NSW Strategic Directions 2012-2015. 2012. Cassidy, Tony, and Melanie Giles. "Further Exploration of the Young Carers Perceived Stress Scale: Identifying a Benefit-Finding Dimension." British Journal of Health Psychology 18.3 (2013): 642-655. Cheshire, Anna, Julie H. Barlow, and Lesley A. Powell. "The Psychosocial Well-Being of Parents of Children with Cerebral Palsy: A Comparison Study." Disability and Rehabilitation 32.20 (2010): 1673-1677. Dunn, Michael E., et al. "Moderators of Stress in Parents of Children with Autism." Community Mental Health Journal 37.1 (2001): 39-52. Earley, Louise, Delia Cushway, and Tony Cassidy. "Children's Perceptions and Experiences of Care Giving: A Focus Group Study." Counselling Psychology Quarterly 20.1 (2007): 69-80. Early, Louise, Delia Cushway, and Tony Cassidy. "Perceived Stress in Young Carers: Development of a Measure." Journal of Child and Family Studies 15.2 (2006): 165-176. Ekas, Naomi V., Diane M. Lickenbrock, and Thomas L. Whitman. "Optimism, Social Support, and Well-Being in Mothers of Children with Autism Spectrum Disorder." Journal of Autism and Developmental Disorders 40.10 (2010): 1274-1284. Faso, Daniel J., A. Rebecca Neal-Beevers, and Caryn L. Carlson. "Vicarious Futurity, Hope, and Well-Being in Parents of Children with Autism Spectrum Disorder." Research in Autism Spectrum Disorders 7.2 (2013): 288-297. Gallagher, Stephen, et al. "Predictors of Psychological Morbidity in Parents of Children with Intellectual Disabilities." Journal of Pediatric Psychology 33.10 (2008): 1129-1136. Gardiner, Emily, and Grace Iarocci. "Unhappy (and Happy) in Their Own Way: A Developmental Psychopathology Perspective on Quality of Life for Families Living with Developmental Disability with and without Autism." Research in Developmental Disabilities 33.6 (2012): 2177-2192. Glidden, L. M., F. J. Billings, and B. M. Jobe. "Personality, Coping Style and Well-Being of Parents Rearing Children with Developmental Disabilities." Journal of Intellectual Disability Research 50.12 (2006): 949-962. Hastings, Richard P., et al. "Coping Strategies in Mothers and Fathers of Preschool and School-Age Children with Autism." Autism 9.4 (2005): 377-91. Heiman, Tali. "Parents of Children with Disabilities: Resilience, Coping, and Future Expectations." Journal of Developmental and Physical Disabilities 14.2 (2002): 159-171. Johnson, Douglas C., et al. "Development and Initial Validation of the Response to Stressful Experiences Scale." Military Medicine 176.2 (2011): 161-169. Jurkovic, GregoryJ, Alison Thirkield, and Richard Morrell. "Parentification of Adult Children of Divorce: A Multidimensional Analysis." Journal of Youth and Adolescence 30.2 (2001): 245-257. Kaplan, Carol P., et al. "Promoting Resilience Strategies: A Modified Consultation Model." Children & Schools 18.3 (1996): 158-168. King, G. A., et al. "A Qualitative Investigation of Changes in the Belief Systems of Families of Children with Autism or Down Syndrome." Child: Care, Health and Development 32.3 (2006): 353-369. Knight, Kathryn. "The Changing Face of the ‘Good Mother’: Trends in Research into Families with a Child with Intellectual Disability, and Some Concerns." Disability & Society 28.5 (2013): 660-673. Kuhn, Jennifer C., and Alice S. Carter. "Maternal Self-Efficacy and Associated Parenting Cognitions among Mothers of Children with Autism." American Journal of Orthopsychiatry 76.4 (2006): 564-575. Lach, Lucyna M., et al. "The Health and Psychosocial Functioning of Caregivers of Children with Neurodevelopmental Disorders." Disability and Rehabilitation 31.8 (2009): 607-18. Lloyd, T. J., and R. Hastings. "Hope as a Psychological Resilience Factor in Mothers and Fathers of Children with Intellectual Disabilities." Journal of Intellectual Disability Research 53.12 (2009): 957-68. Luthar, Suniya S., Dante Cicchetti, and Bronwyn Becker. "The Construct of Resilience: A Critical Evaluation and Guidelines for Future Work." Child Development 71.3 (2000): 543-62. Masten, Ann S., and Jelena Obradović. "Competence and Resilience in Development." Annals of the New York Academy of Sciences 1094.1 (2006): 13-27. Midence, Kenny, and Meena O’Neill. "The Experience of Parents in the Diagnosis of Autism: A Pilot Study." Autism 3.3 (1999): 273-85. Monin, Joan K., et al. "Linguistic Markers of Emotion Regulation and Cardiovascular Reactivity among Older Caregiving Spouses." Psychology and Aging 27.4 (2012): 903-11. O'Dwyer, Siobhan, Wendy Moyle, and Sierra van Wyk. "Suicidal Ideation and Resilience in Family Carers of People with Dementia: A Pilot Qualitative Study." Aging & Mental Health 17.6 (2013): 753-60. Pennebaker, James W., Tracy J. Mayne, and Martha E. Francis. "Linguistic Predictors of Adaptive Bereavement." Journal of Personality and Social Psychology 72.4 (1997): 863-71. Rasmussen, Heather N., et al. "Self-Regulation Processes and Health: The Importance of Optimism and Goal Adjustment." Journal of Personality 74.6 (2006): 1721-48. Simon, Joan B., John J. Murphy, and Shelia M. Smith. "Understanding and Fostering Family Resilience." The Family Journal 13.4 (2005): 427-36. Singer, George H. S. "Meta-Analysis of Comparative Studies of Depression in Mothers of Children with and without Developmental Disabilities." American Journal on Mental Retardation 111.3 (2006): 155-69. Skovdal, Morten, and Eleni Andreouli. "Using Identity and Recognition as a Framework to Understand and Promote the Resilience of Caregiving Children in Western Kenya." Journal of Social Policy 40.03 (2011): 613-30. Sörensen, Silvia, et al. "Dementia Care: Mental Health Effects, Intervention Strategies, and Clinical Implications." The Lancet Neurology 5.11 (2006): 961-73. Stein, Judith A., Mary Jane Rotheram-Borus, and Patricia Lester. "Impact of Parentification on Long-Term Outcomes among Children of Parents with Hiv/Aids." Family Process 46.3 (2007): 317-33. Tompkins, Tanya L. "Parentification and Maternal HIV Infection: Beneficial Role or Pathological Burden?" Journal of Child and Family Studies 16.1 (2007): 108-18. Turnbull, Ann P., et al. "Conceptualization and Measurement of Family Outcomes Associated with Families of Individuals with Intellectual Disabilities." Mental Retardation and Developmental Disabilities Research Reviews 13.4 (2007): 346-56. Vitaliano, Peter P., Jianping Zhang, and James M. Scanlan. "Is Caregiving Hazardous to One's Physical Health? A Meta-Analysis." Psychological Bulletin 129.6 (2003): 946-72. Walsh, Froma. "Family Resilience: A Framework for Clinical Practice." Family Process 42.1 (2003): 1-18. Whittingham, Koa, et al. "Sorrow, Coping and Resiliency: Parents of Children with Cerebral Palsy Share Their Experiences." Disability and Rehabilitation 35.17 (2013): 1447-52. Wrosch, Carsten, et al. "Giving Up on Unattainable Goals: Benefits for Health?" Personality and Social Psychology Bulletin 33.2 (2007): 251-65. Wrosch, Carsten, et al. "The Importance of Goal Disengagement in Adaptive Self-Regulation: When Giving Up Is Beneficial." Self and Identity 2.1 (2003): 1-20. Yamada, Atsurou, et al. "Emotional Distress and Its Correlates among Parents of Children with Pervasive Developmental Disorders." Psychiatry and Clinical Neurosciences 61.6 (2007): 651-57. Zauszniewski, Jaclene A., Abir K. Bekhet, and M. J. Suresky. "Resilience in Family Members of Persons with Serious Mental Illness." Nursing Clinics of North America 45.4 (2010): 613-26.