The Experience of Distress in Parents of Chronically Ill Children: Potential or Likely Outcome?

Hauenstein, Emily J.

doi:10.1207/s15374424jccp1904_7

Cited by 86 publications

(65 citation statements)

References 44 publications

(46 reference statements)

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“…29 A further explanation for the parents' positive evaluation of MI-E in this study relates to the parents' experience of greater control over their child's health. 30 This small increase in control was reported as very important to participating parents, as they felt they could do something for their child. The concept of empowerment in caregivers has been recognized as particularly important when a child has a progressive condition over which there is very little control.…”

Section: Discussionmentioning

confidence: 99%

“…The concept of empowerment in caregivers has been recognized as particularly important when a child has a progressive condition over which there is very little control. 30,31 Negative impacts included a lack of choice in shifting to home MI-E treatment. In other studies, parents similarly expressed concern about the lack of choice in considering life-support technologies (eg, ventilatory support) due to the consequences of not beginning ventilation 32 and the potential quality-of-life benefits for the child.…”

Section: Discussionmentioning

confidence: 99%

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Lifestyle Implications of Home Mechanical Insufflation-Exsufflation for Children With Neuromuscular Disease and Their Families

Moran¹,

Spittle

Delany

2014

Respir Care

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BACKGROUND: Mechanical insufflation-exsufflation (MI-E) is increasingly used in the home management of children with neuromuscular disease. Research to date has focused on the effect of MI-E on physical health. The aim of this study was to qualitatively investigate the impact of home MI-E on the child and family's lifestyle. METHODS: Eight parents and 3 children participated in semistructured interviews. RESULTS: Five themes emerged from parent interviews demonstrating: (1) lifestyle implications, (2) parents becoming experts, (3) parents developing a sense of control over their child's condition, (4) an element of extra care, and (5) impacts on the parent-child relationship. Developing themes from the child interviews showed them adjusting to and then relying on the device. Home MI-E medicalized the home, but the overall lifestyle impact was positive. CONCLUSIONS: Although involving a small number of subjects, this study demonstrated a mixture of opposing impacts of home MI-E on lifestyle, both enabling and disabling, which need to be considered when introducing home MI-E. The positive impacts included greater ability to manage the child's health, including avoidance of hospital admissions. Negative impacts were greatest for those parents who were sole operators of the device, including a frequently disrupted lifestyle.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Lifestyle Implications of Home Mechanical Insufflation-Exsufflation for Children With Neuromuscular Disease and Their Families

Moran¹,

Spittle

Delany

2014

Respir Care

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“…The new roles that parents must learn and the illness demands they need to manage may have significant psychosocial effects including depression, isolation, fewer social interactions, frustration, and feelings of distress (Hauenstein, 1990;Raina, O'Donnell, & Schwellnus et al, 2004). Functional limitations of a child with a chronic health condition, the perception of role restriction, and impact of the condition on family life may increase depressive symptoms in mothers (Ireys & Silver, 1996;Silver, Bauman, & Weiss, 1999).…”

Section: Review Of Related Literaturementioning

confidence: 99%

Mental Health of Mothers Caring for Ventilator-Assisted Children at Home

Kuster

Badr

2006

Issues in Mental Health Nursing

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The complex management of ventilator-assisted children cared for in the home can place emotional and mental strain on parents, in particular, mothers. The purpose of this study was to explore the relationships among functional status of the child, impact of ventilator-assistance on the family, coping, social support, and depression in mothers caring for ventilator-assisted children at home. Thirty-eight mothers participated in the study. Almost half of the mothers experienced depressive mood symptoms. Impact on family was positively related to depression and social support was inversely related to depression. In addition, social support was a significant predictor of depression. The findings show that the high demands related to the care of ventilator-assisted children can be a significant risk factor for poor mental health outcomes of those mothers providing care at home. Interventions by mental health and pediatric nurses should focus on enhancing mothers' coping skills and assisting mothers in accessing a positive social network to help mediate the stress related to caring for their child.

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“…Parents need to learn to manage several roles and the illness demands of the child, all of which may lead to depression, isolation, fewer social interactions, restricted career mobility, frustration, and feelings of distress (Hauenstein, 1990). Mothers of chronically ill or technology-assisted children have experienced significantly more depressive and psychiatric symptoms (Jessop, Reissman, & Stein, 1988;Thyen, Kuhlthau, & Perrin, 1999).…”

mentioning

confidence: 99%

Caregiving Stress, Immune Function, and Health: Implications for Research With Parents of Medically Fragile Children

Kuster

Merkle

2004

Issues in Comprehensive Pediatric Nursing

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Caregiving stress has been associated with considerable demands imposed on parents responsible for the physical and emotional care of medically fragile children. With health care advances in medicine and technology, there are a growing number of children with chronic conditions and disabilities (i.e., the medically fragile) surviving longer and being cared for almost exclusively in the home by parents. The physical strains, financial constraints, emotional effects, and social isolation experienced by parents caring for children with such complex medical needs may ultimately impact their physical and emotional health. Stress associated with the caregiving of older adults has been shown to negatively impact on health and immune functioning with the potential for associated morbidity. Studies exploring the relationship of stress with biological markers of immune functioning in parents have not been widely conducted. Therefore, there is a great opportunity in parent-child health for researchers to investigate implications of stress on immune functioning and health outcomes in parents caring for medically fragile children at home. The purpose of this review article will be to provide an overview of the literature related to caregiving stress and immune functioning and to discuss implications for research in this area with parents of medically fragile children.

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The Experience of Distress in Parents of Chronically Ill Children: Potential or Likely Outcome?

Cited by 86 publications

References 44 publications

Lifestyle Implications of Home Mechanical Insufflation-Exsufflation for Children With Neuromuscular Disease and Their Families

Lifestyle Implications of Home Mechanical Insufflation-Exsufflation for Children With Neuromuscular Disease and Their Families

Mental Health of Mothers Caring for Ventilator-Assisted Children at Home

Caregiving Stress, Immune Function, and Health: Implications for Research With Parents of Medically Fragile Children

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