Nursing Assessment of Parental Coping with Cystic Fibrosis

McCubbin, Marilyn A.; Bowers, Joan E.; Holaday, Bonnie

doi:10.1177/019394598400600404

Cited by 22 publications

(11 citation statements)

References 10 publications

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“…Positive thinking was the most common form of coping in our population and has also been noted as the main source of coping in patients awaiting heart transplant (Cupples et al 1998;Porter et al 1994). An optimistic interpretation of the disease is also noted in children with another chronic genetic disease, cystic fibrosis (CF) (McCubbin 1984;Venters 1981). Delaying worry was described as an effective process of coping and adapting by our population and has also been used by CF families (Bywater 1981;Kellerman et al 1980).…”

Section: Effective Coping With Disease Uncertaintymentioning

confidence: 86%

Waiting for the next Shoe to Drop: The Experience of Parents of Children with Fanconi Anemia

Zierhut¹,

Bartels

2011

Journal of Genetic Counseling

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Fanconi Anemia (FA) is a rare genetic disease that generally affects children and results in bone marrow failure requiring blood or marrow transplantation for survival. A unique feature of the condition is the long, often many years, waiting period between genetic diagnosis and treatment. This qualitative study looked at the lived experience of parents confronting their child's diagnosis of FA. We aimed to describe factors which parents found helpful or detrimental during the waiting time period and to recommend strategies to support families who will have these experiences in the future. Categories that emerged were: parents' emotional responses, thoughts about FA (which occurred daily for most parents), sources of stress, mechanisms of coping, family dynamics and responses that were supportive and non-supportive. We found that most parents experience stress, uncertainty, and active surveillance throughout the course of the illness. Healthcare professionals, and especially physicians, were agents of both the most and least supportive experiences of parents. Parents described family centered team care as helpful throughout the illness and health professional education as a priority need.

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Section: Effective Coping With Disease Uncertaintymentioning

confidence: 86%

Waiting for the next Shoe to Drop: The Experience of Parents of Children with Fanconi Anemia

Zierhut¹,

Bartels

2011

Journal of Genetic Counseling

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“…Almost 21% of parents endorsed experiencing relationship problems with the adults in the home including fights and talk of separation or divorce, with nearly 20% reported being “single” or “separated/divorced”. Understanding family functioning is important as sharing the burden of managing a chronic illness with family members or another person outside of the family can serve as an effective coping strategy, as well as decrease family vulnerability to stress …”

Section: Discussionmentioning

confidence: 99%

“…Understanding family functioning is important as sharing the burden of managing a chronic illness with family members or another person outside of the family can serve as an effective coping strategy, as well as decrease family vulnerability to stress. [26][27][28] Though the screening information is not diagnostic in nature, approximately 56% of parents reported experiencing "a lot of worry, fear, and anxiety" as well as feeling "sad or depressed". Slightly more than 8% of parents reported the occurrence of problematic drug or alcohol use for an adult in the home.…”

Section: Discussionmentioning

confidence: 99%

Assessing psychosocial risk in pediatric cystic fibrosis

Filigno

Miller

Moore

et al. 2019

Pediatric Pulmonology

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Background Psychosocial risk factors are known to impact quality of life, treatment adherence, and health outcomes. No standardized comprehensive psychosocial risk screener is routinely utilized in cystic fibrosis (CF) care. The objectives of the study were to describe the range and severity of psychosocial risk within this CF population, investigate the reliability of a comprehensive psychosocial screener in pediatric CF clinical care, and explore relationships between psychosocial risk and key factors affecting health outcomes. It was hypothesized that the PAT‐CF total and subscale α coefficients would be similar to those found in other pediatric medical populations. Method Parents of 154 children with CF completed a CF‐specific version of the Psychosocial Assessment Tool_All‐lit (PAT‐CF), an empirically‐based psychosocial risk assessment, during routine CF clinical care. Results The internal consistency of the PAT‐CF Total score was 0.71. Total score and subscale reliabilities reflect findings in other pediatric populations. Total risk scores fell in the following categories: 7% (Clinical‐highest risk), 41% (Targeted), and 52% (Universal‐lowest risk), respectively. Increased psychosocial risk was associated with Medicaid status and lower parent education, whereas having private insurance was associated with decreased psychosocial risk. Conclusions The PAT‐CF can feasibly be used as an empirically‐based comprehensive psychosocial risk tool in routine CF care and is acceptable by parents. In addition to providing universal anticipatory guidance regarding child and family wellness, early identification of risk factors allows care teams to proactively provide targeted support and intervention for specific psychosocial risk factors to promote improved quality of life and ability to sustain daily care.

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“…The importance of a broader understanding of parents' perceptions of the child's illness management, and adjustments that must be made in order to accommodate the demands of the experience, has been emphasized in the literature (Anderson 1981, McCubbin 1984, Knalf & Deatrick 1986, Anderson & Elfert 1989, Deatrick & Knalf 1990, Kodadek & Haylor 1990, Whyte 1992. Chronic childhood illness, however, remains a major challenge for nurses as they conceptualize family caregiving and involve families in their child's care.…”

Section: Purpose Of the Researchmentioning

confidence: 99%

Parents' experience of coming to know the care of a chronically ill child

Jerrett

1994

Journal of Advanced Nursing

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The family is the primary source of care for a chronically ill child, and it is the parents who must manage the child's illness on a daily basis. This qualitative study was undertaken to investigate the ways in which 10 two-parent families of children with juvenile arthritis experience their child's illness. In this paper the theme of coming to terms with the management of the illness and what it entails for the parents is examined. The data provide evidence of how the parents learn, and their efforts and experience of learning to care for the child on a daily basis. This is a complex process and includes the different phases the parents experience as they move through the learning process. The findings suggest that the parents learn the child's care and make adjustments to the demands of managing the child's illness in a way that works best for them.

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Nursing Assessment of Parental Coping with Cystic Fibrosis

Cited by 22 publications

References 10 publications

Waiting for the next Shoe to Drop: The Experience of Parents of Children with Fanconi Anemia

Waiting for the next Shoe to Drop: The Experience of Parents of Children with Fanconi Anemia

Assessing psychosocial risk in pediatric cystic fibrosis

Parents' experience of coming to know the care of a chronically ill child

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