Stress and well‐being among parents of children with rare diseases: a prospective intervention study

Dellve, Lotta; Samuelsson, Lena; Tallborn, Andreas; Fasth, Anders; Hallberg, Lillemor R.‐M.

doi:10.1111/j.1365-2648.2006.03736.x

Cited by 207 publications

(191 citation statements)

References 31 publications

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“…This is in concurrence with the caregiving literature that state women to have more caregiving stress than men. (Dellve, 2006;Tomiak, 2007;Gray, 2003;Rubin, 1987) Significant differences were observed among the fathers and mothers with regard to the coping strategies of focus on and venting of emotions (P<0.001), religious coping (P<0.001) and substance abuse (P<0.05). Mothers and other female caregivers tended to utilize the emotional ventilation and religious coping as a coping strategy more often than the fathers and male caregivers.…”

Section: Discussionmentioning

confidence: 99%

Family Care giving in Duchenne Muscular Dystrophy: Is there a gender difference?

Thomas¹,

Rajaram²,

Neuro³

2014

IOSRJNHS

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Section: Discussionmentioning

confidence: 99%

Family Care giving in Duchenne Muscular Dystrophy: Is there a gender difference?

Thomas¹,

Rajaram²,

Neuro³

2014

IOSRJNHS

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“…Parents of children with lifelimiting diseases other than cancer reported unmet needs related to practical support for care at the onset of illness, availability of professional psychosocial support, and involvement in decision-making processes. Empirical studies addressing parental needs of children with life-limiting diseases other than cancer have described problems related to being left alone with worries, having difficulty in finding information about the child's disease, financial support, and managing everyday caregiving [5,13,24]. To overcome one of these difficulties, parents expressed a need for practical support right at the beginning of the illness, when struggling to adapt to the new and demanding situation.…”

Section: Discussionmentioning

confidence: 99%

“…However, studies concerning PPC often include only one diagnostic group, mainly cancer [12,16,18,23,29], and may, therefore, not differentiate between the needs of families affected by children with different diseases. There is a paucity of research concerning PPC for children with neurological or metabolic diseases [5,7,25]. These children represent a challenging population for PPC, because their diseases tend to follow a protracted, undulating, and unpredictable course [10].…”

Section: Introductionmentioning

confidence: 99%

Palliative care for children and adolescents in Switzerland: a needs analysis across three diagnostic groups

2011

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The objective of this qualitative study was to explore the perceptions and needs of families who care for a child with a life-limiting disease. Considering the heterogeneity of life-limiting diseases in childhood, three diagnostic groups were defined: (a) cancer, (b) neurological disorders, and (c) non-cancer/non-neurological conditions. Fifteen parents whose child had been treated in one of four children's hospitals and received palliative care or had died within the previous 2 years were interviewed. The main interview topics were: communication with professionals, need for support in care (at home or hospital), and bereavement support. Irrespective of the center of care, parents of children with diagnoses other than cancer reported a lack of support concerning practical issues of care and psychosocial aspects. Parents of children with cancer expressed difficulties related to coordination of care especially when care was provided at home. Bereaved parents emphasized their wish for bereavement support. Our findings demonstrate shortcomings in pediatric palliative care in Switzerland and outline basic needs of affected families including psychosocial support, coordination of care and bereavement support. Based on these findings we formulate some suggestions on how to initiate pediatric palliative care in a most efficient way and tailored to the needs of families in Switzerland.

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“…Trata-se da questão do gênero nas relações de cuidado como um padrão cultural, que atribui à mãe o papel de incondicionalidade e, geralmente, exclusividade nos cuidados para com o filho doente (Badinter, 1985;Dellve, Samuelsson, Tallborn, Fasth & Hallberg, 2006;Castro & Piccinini, 2002;Silva & Correa, 2006).…”

Section: Discussionunclassified

Sobrecarga emocional e qualidade de vida em mães de crianças com erros inatos do metabolismo

Pontes-Fernandes

Petean

2011

Psic.: Teor. e Pesq.

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RESUMO -Este estudo objetivou investigar a sobrecarga emocional e a percepção da própria qualidade de vida em mães de crianças com Erros Inatos do Metabolismo (EIM). Participaram 21 mães de crianças com EIM, com comprometimento neurológico grave, de ambos os sexos, com idade até dez anos. A coleta de dados foi realizada por meio dos instrumentos WHOQOL-Bref e Burden Interview. Os dados foram analisados estatisticamente e comparados. Foi observado que os cuidados com a criança com EIM interferem negativamente na qualidade de vida das mães, sobretudo no domínio relações sociais, acarretando uma sobrecarga emocional, de tal forma que quanto maior a sobrecarga, mais baixa a percepção sobre a própria qualidade de vida.Palavras-chave: doença crônica, sobrecarga emocional, qualidade de vida Emotional Burden and Quality of Life of Mothers with Children Having Inborn Errors of MetabolismABSTRACT -This study aims to investigate the perception of women having children with Inborn Errors of Metabolism (IEM) about the experienced emotional burden and their own quality of life. The participants were 21 mothers of children with IEM, with serious neurological injury. The children were of both sexes, up to ten years old. Data collection was accomplished through instruments WHOQOL-Bref and Burden Interview. The data were statistically analyzed and compared. The care of children with IEM interfere in a negative way in the quality of life of the mother, especially in the domain of their social relations, resulting in an emotional burden; the greater the burden, the lower the perceived quality of life.

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Stress and well‐being among parents of children with rare diseases: a prospective intervention study

Abstract: Parents, especially fathers and full-time working parents, may benefit from an intensive family competence programme.

Cited by 207 publications

References 31 publications

Family Care giving in Duchenne Muscular Dystrophy: Is there a gender difference?

Family Care giving in Duchenne Muscular Dystrophy: Is there a gender difference?

Palliative care for children and adolescents in Switzerland: a needs analysis across three diagnostic groups

Sobrecarga emocional e qualidade de vida em mães de crianças com erros inatos do metabolismo

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