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Running head: WRITTEN RESPONSE 3 - THE CAREGIVER STRESSORS AND COPING MECHANISMS IN PARENTING A CHILD WITH A CHRONIC MEDICAL DISORDER Written Response 3 The Caregiver Stressors and Coping Mechanisms in Parenting a Child with a Chronic Medical Disorder Written Response 3 - The Caregiver Stressors and Coping Mechanisms in Parenting a Child with a Chronic Medical Disorder Introduction According to recent statistic data, over 31 per cent of children aged 18 and less have at least one chronic disease (Newacheck, 1994), where chronic disease is referred to as a prolonged disability or illness affecting childs daily functioning. When dealing with children suffering from acute diseases parents are mostly focused on a cure, while when dealing with chronic diseases in children, the major emphasis is placed on care (Athreya, 1997). It should be also mentioned that although there is a lot of information about the needs of chronically ill children, their families, and multiple stressors involved, there is still little or no reliable findings and evidence-based strategies aimed to improve coping outcomes over time. Numerous national agendas are aimed at provision of accessible and community-based family-centered services for chronically ill children (Hutchins & McPherson, 1991).
Yet, it should be mentioned that these attempts are mostly unsuccessful, because of the peculiarities of rapidly changing healthcare environment (e. g. , recent changes such as reduced length of hospital stays, the emphasis on cost reductions, etc) nurses find it very difficult to continue performing thorough psychosocial interventions and assessments with the members of family with chronically ill children, focusing instead on the needs of a child (Melnyk, Feinstein, Moldenhouer, & Small, 2001). As an outcome, the parents of a chronically ill child are often left aside, and feel complete isolation and helpless in their attempts to cope with the ongoing stressors of the chronic illness suffered by their child. Therefore, taking into consideration all this, the present study is aimed to examine the stressors encountered by parents with chronically ill children, using a theoretical model that can be applied in guiding interventions or assessment with parents, to provide an overview of their response to stressors with the lapse of time, to discuss the caregiver stressors and coping mechanisms in parenting a child with a chronic medical disorder to provide an overview of possible instruments for assessment of parental coping with the childs illnesses, to consider crucial aspects required to assess when dealing with such parents, to evaluate resources that have been effective for families who have children with a chronic medical disorder, taking into consideration intervention studies that were conducted to improve coping in parents with a child with a chronic medical disorder. Stressors in Parents with a Child with a Chronic Medical Disorder Caregiver stressors are stipulated by various reasons and conditions, however, they are multiple and ongoing. Basically, they fall under few categories: Stressors parents with a child with a chronic medical disorder encounter at the time of diagnosis; Stressors experienced by parents during developmental transitions; Stressors stipulated by the ongoing health care specific needs of a chronically ill child; Finally, stressors encountered by parents as their child undergoes the process of disease exacerbations and hospitalizations; In order to understand each stressor, it is important to examine them more thoroughly.
The Caregiver Stressors Encountered During the Diagnosis Obviously, the diagnosis of a chronic disease is an especially stressful event for the childs parents. According to Whyte (1992), the complete understanding of the child's diagnosis rarely comes with the initial diagnosis. Despite this fact, it is very important to understand that parents with such a child relatively often acquire full comprehension of the seriousness of the childs chronic illness and experience the initial impact of it. As this occurs, the parents with a chronically ill child encounter stressors of the childs chronic condition, as the parents often have a feeling that something is going on before the diagnosis is received (Club, 1991; Knife, Ayres, Gallo, Zoeller, & Breitmayer, 1995). The vast majority of researchers agree that the most influential stressor is parents feeling of uncertainty concerning the condition of their child and the childs potential outcomes (Cohen, 1993; Cohen & Martinson, 1988; Wereszczak, Miles, & Hold itch-Davis, 1997). Cohen (1993) also notes that parents are likely to encounter the loss of the previously feeling of safety and experience fear for potential loss of their chronically ill child.
Parents of a child with a chronic medical disorder are also likely to accentuate on potential fear of separation from their child, role strains and altered parenting roles as important stressors (Mu & Tomlinson, 1997; Perlman, 1986; Wereszczak et al. , 1997). In addition, the understanding of parents inability to care for their chronically ill child, and being aware of necessity to place their child in a hospital or diagnostic centre, is also an extremely influential stressor for the caregivers (Hughes & McCollum, 1994). It should be also mentioned that although the fact of discovery of the childs chronic illness brings some relief concerning the seriousness of the childs disease, it still hardly provides the parents with all necessary knowledge concerning the illness and the required actions parents need to undertake (Cohen & Martinson, 1988). Also, in these circumstances, the pediatric or neonatal intensive care unit plays a role of additional stressor for caregivers (Hughes & McCollum, 1994). Clements, Copeland, & Loftus (1990) assert that the vast majority of stressors encountered by parents during the diagnosis stage may last for a relatively long period of time afterwards.
In this respect, the parents of a child with chronic illness also encounter additional difficulties in deciding whom to tell about the childs chronic medical disorder, and in their communication with health care providers (Perlman, 1986). Austin (1990), Can (1993), Mintzer, Als, Trick, and Braz elton (1985) and Tanner, Desert, and Friedan (1998) also place emphasis on fact that shock, denial, disbelief and anger are among commonly encountered responses in parents with children with chronic medical disorders. Frustration, depression, confusion, and despair also belong to additional parental responses (Cohen, 1993; Magni, Messina, De Leo, Moscow, & Carli, 1983). Sometimes parents feel decreased self-worth, guilt, and lack of confidence (Stevens, 1994). The Caregiver Stressors Encountered During the Developmental Transitions Stage Yoos (1987) claims that chronically ill children need to accomplish the same developmental tasks like their peers with no medical disorders.
Yet, it should be mentioned that chronic illness may have a negative impact on the childs cognitive, psychological, physical or emotional health, thus putting obstacles on the way of achieving developmental tasks. In result, the parents often encounter recurrent or even chronic feeling of guilt and sorrow, as they suffer noticing their child attempting to accomplish developmental tasks but in vain. The parents also negatively influenced by the childs illness, as they notice differences between chronically ill child and his or her healthy peers. The concept of chronic sorrow referred to as a coping mechanism that allows for periodic grieving was first coined by Olshansky in 1962 (Melnyk, Feinstein, Moldenhouer, & Small, 2001). Phillips (1991) also examined chronic sorrow in relation to the parents with children with congenital anomalies and near-drowning experiences, Bushman (1988) provided an overview of impact of this aspect on parents with children with orthopedic problems, and Eyes (1995) examined it in relation to parents with children with chronic mental health problems. According to Club (1991), there is another model that is also used to describe the parents reaction to childs chronic medical illness.
This is a time-bound model, according to which adaptation of the parents to child's chronic illness takes place in due course, with a lapse of time. This model also implies that the parents accept disability of their child (Club, 1991). The model comprises of few sequential stages, namely: (a) impact; (b) denial; (c) grief; (d) focusing attention; and (e) closure. (Melnyk, Feinstein, Moldenhouer, & Small, 2001) However, it is still unclear whether the parents can really achieve the closure stage. In these terms, another model, so-called hybrid model has been suggested. This model embraces the elements of both the time-bound framework and the chronic sorrow concept. (Melnyk, Feinstein, Moldenhouer, & Small, 2001) According to it, the parents with a chronically ill child undergo all stages of the time-bound model, and re-experience peaks in the grieving process during developmental transitions and high-risk periods previously described. (Melnyk, Feinstein, Moldenhouer, & Small, 2001) The researchers also place high emphasis on parental responses with regards to prematurely born infants, those with chronic condition, as these infants face challenges for survival after birth, normal development, as well as the establishment of healthy attachments between the parents and their infant. In addition, parents often experience difficulties in developing positive feelings towards chronically ill infants, due to feeling of guilt, anger, disappointment, or fear of potential loss of their child (Miles & D'Area, 1994).
Robson (1997) also mentions that parents often encounter acute or recurrent distress because they consistently come across with the fact that their child differs (sometimes significantly due to delay in development) from his or her healthy peers. Coping Mechanisms in Parenting a Child with a Chronic Medical Disorder Lazarus & Folkman (1984) define coping as "constantly changing cognitive and behavioral efforts to manage specific external and internal demands that are appraised as taxing or exceeding the resources of the person. " The vast majority of researchers consider that coping mechanisms basically have two parallel functions, namely emotional coping (or regulation of emotional responses, and functional coping (or the solving of possible problems encountered by parents) (Lazarus & Folkman, 1984; Moos & Schaefer, 1986; Rutter, 1981). In such a way, it is important to evaluate outcomes of both parallel functions during the assessment of coping mechanisms in parenting a child with chronic medical disorder. The assessment of coping mechanisms should take into consideration the emotional level experienced by parents, for example parental mood state (depression, anger, guilt, anxiety, etc) and the way how parents cope with their family and parental roles in relation to their chronically ill child. The researchers agree that all these assessments play crucial role, because the childs outcomes are impacted by parental ability to cope (Melnyk, Alpert-Gillis, Hensel, Cable-Being, & Rubenstein, 1997).
Basically, there are many instruments and methods that can be used to evaluate coping in parents with chronically ill children. It is very important to assess not only parental responses to the childs chronic illness, but also to evaluate parental strengths and positive coping outcomes along with the measurement of coping responses at a family level (McCubbin et al. , 1983). It should be also mentioned that the vast majority of instruments were not originally designed for parents with chronically ill children; however few of them were developed to identify specific perceived needs, parental responses, and parental functional and emotional coping outcomes (Harris, Canning, & Kelleher, 1996). Assessing coping mechanisms in parents with chronically ill children, it should be also noticed that nurses can be considered to be in a prime position to assess parents coping strategies and outcomes.
This primarily occurs because nurses have long term contact with both parents and their chronically ill children in various settings, such as clinic, school, or hospital, to mention a few. However, it should be taken into consideration that due to the complexity of coping responses in parents and complexity of children's chronic diseases the use of different techniques should be recommended for assessment, if time allows. Thus, the strategies may include but not be limited to checklists, interviews, questionnaires, etc. It should be also noted that assessment instruments should not replace sensitive interviews conducted by health care...
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