The Impact on Family Scale: Psychometric analysis of long and short forms in parents of children with epilepsy

Dehn, Lorenz B.; Korn-Merker, E; Pfäfflin, Margarete; Ravens‐Sieberer, Ulrike; May, Theodor W.

doi:10.1016/j.yebeh.2013.12.030

Cited by 28 publications

(20 citation statements)

References 30 publications

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“…However, it is well recognized that poorer parental health-related quality of life (HRQoL) and substantial burden of care in everyday life can be of concern, particularly for mothers of disabled children (Caicedo, 2014). Caregiver burden, described by Dehn, Korn-Merker, Pfafflin, Ravens-Sieberer, and May (2014), encompasses financial outlays, restrictions in terms of social life, decreased interaction with significant others, reduced time for other family members, and increased subjective distress or strain. However, it has been shown that raising a child with disabilities can also strengthen a family (Dykens, 2015;Graungaard, Andersen, & Skov, 2011).…”

mentioning

confidence: 99%

When children with profound multiple disabilities are hospitalized: A cross‐sectional survey of parental burden of care, quality of life of parents and their hospitalized children, and satisfaction with family‐centered care

Seliner

Latal

Spirig

2016

Specialist Pediatric Nursing

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mentioning

confidence: 99%

When children with profound multiple disabilities are hospitalized: A cross‐sectional survey of parental burden of care, quality of life of parents and their hospitalized children, and satisfaction with family‐centered care

Seliner

Latal

Spirig

2016

Specialist Pediatric Nursing

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“…Carpay and associates [42] developed the Hague Seizure Severity Scale for use in children and the Hague Side Effects Scale. The impact of having a child with epilepsy on family life can be considerable, and it may be reliably evaluated [43].…”

Section: Discussionmentioning

confidence: 99%

The Personal Impact of Epilepsy Scale (PIES)

Fisher¹,

Nune²,

Roberts³

et al. 2015

Epilepsy & Behavior

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“…[17][18][19][20] The IOF was developed to measure the impact of children's illnesses on families, but has also been used with families of children with life-threatening illnesses. 13,14 The scale includes 15 items assessing various aspects of family stress and strain in various settings.…”

Section: Methodsmentioning

confidence: 99%

Does Decisional Conflict Differ Across Race and Ethnicity Groups? A Study of Parents Whose Children Have a Life-Threatening Illness

Knapp

Hinojosa

Baron-Lee

et al. 2014

Journal of Palliative Medicine

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Objective: Children with life-threatening illnesses and their families may face a myriad of medical decisions in their lifetimes. Oftentimes these complicated medical decisions cause disagreements among patients, families, and providers about what is the best course of action. Although no evidence exists, it is possible that conflict may affect subgroups of the population differently. This study aims to investigate how decisional conflict varies among racial and ethnic subgroups. Sample: Two hundred sixty-six surveys were completed with parents whose children have a life-threatening illness. All children lived in Florida and were enrolled in the Medicaid program. The Decisional Conflict Scale, overall and broken down into its five distinct subscales, was used to assess parental decision-making. Descriptive, bivariate, and multivariate analyses were conducted. Subgroup analyses were conducted on Latino respondents. Results: Our bivariate results suggest that minority parents report less Effective Decision Making ( p < 0.05) and report less Support in Decision Making ( p < 0.05) compared to white, non-Hispanic parents. For the subgroup analysis, we found that those who identify as Mexican American and Central/South American report having greater Uncertainty in Choosing Options ( p < 0.05) and less Values Clarity ( p < 0.05) as compared to Puerto Rican or Cuban Americans. Results from the multivariate analyses suggest that those whose primary language is not English are associated with greater Uncertainty in Choosing Options ( p < 0.05). Values Clarity was lower for children who were diagnosed with their life-threatening condition at birth ( p < 0.05) as compared to children diagnosed at a later time. Conclusions: Our study is the first to describe racial and ethnic differences in decisional conflict of parents of children with life-threatening illnesses. Significant differences exist by race, ethnicity, language spoken, and diagnosis time across several subdomains of decisional conflict. These differences are important to address when creating clinical care plans, engaging in shared decision-making, and creating interventions to alleviate decisional conflict.

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The Impact on Family Scale: Psychometric analysis of long and short forms in parents of children with epilepsy

Cited by 28 publications

References 30 publications

When children with profound multiple disabilities are hospitalized: A cross‐sectional survey of parental burden of care, quality of life of parents and their hospitalized children, and satisfaction with family‐centered care

When children with profound multiple disabilities are hospitalized: A cross‐sectional survey of parental burden of care, quality of life of parents and their hospitalized children, and satisfaction with family‐centered care

The Personal Impact of Epilepsy Scale (PIES)

Does Decisional Conflict Differ Across Race and Ethnicity Groups? A Study of Parents Whose Children Have a Life-Threatening Illness

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