Health-Related Quality of Life and Family Functioning of Parents of Children with Medical Complexity

Mann, Kilby; Alvey, Justin; Marty, Colleen; Murphy, Nancy

doi:10.1007/s40141-019-0208-2

Cited by 7 publications

(9 citation statements)

References 28 publications

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“…Finding a new normal following this journey may be daunting for many [ 7 ]. For example, parents of CMC report lower health-related quality of life (HRQOL) when compared to parents of non-CMC, and ratings of mental health QOL are lower than physical ones [ 61 ]. However, families may experience lack of access to suitable mental health services or experience a “lack of fit” in peer support groups [ 62 ].…”

Section: Resultsmentioning

confidence: 99%

“…Behavioral health challenges for family caregivers are largely known to include caregiver stress [ 63 , 64 ]. Family caregivers often perceive that they do not have time to address their own behavioral health needs [ 60 , 61 ]. When they do try to attend to their own needs, they may not be able to access appropriate services due to caregiving-specific barriers to care [ 65 , 66 , 67 ].…”

Section: Resultsmentioning

confidence: 99%

“…Access to coordination of needed services represents a significant challenge. RDs typically require multiple specialists and thus multiple appointments that must be coordinated and attended by the family, many of which may have little experience in complex care settings [ 60 , 61 , 64 ]. While a patient- and family-centered care (PFCC) approach to children’s chronic conditions is often emphasized [ 76 ], care programming has a long way to go to address the needs that arise for families of a child with RD [ 11 ].…”

Section: Resultsmentioning

confidence: 99%

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Psychosocial Considerations for the Child with Rare Disease: A Review with Recommendations and Calls to Action

et al. 2022

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Rare diseases (RD) affect children, adolescents, and their families infrequently, but with a significant impact. The diagnostic odyssey undertaken as part of having a child with RD is immense and carries with it practical, emotional, relational, and contextual issues that are not well understood. Children with RD often have chronic and complex medical conditions requiring a complicated milieu of care by numerous clinical caregivers. They may feel isolated and may feel stigmas in settings of education, employment, and the workplace, or a lack a social support or understanding. Some parents report facing similar loneliness amidst a veritable medicalization of their homes and family lives. We searched the literature on psychosocial considerations for children with rare diseases in PubMed and Google Scholar in English until 15 April 2022, excluding publications unavailable in full text. The results examine RD and their psychosocial ramifications for children, families, and the healthcare system. The domains of the home, school, community, and medical care are addressed, as are the implications of RD management as children transition to adulthood. Matters of relevant healthcare, public policies, and more sophisticated translational research that addresses the intersectionality of identities among RD are proposed. Recommendations for interventions and supportive care in the aforementioned domains are provided while emphasizing calls to action for families, clinicians, investigators, and advocacy agents as we work toward establishing evidence-based care for children with RD.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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Psychosocial Considerations for the Child with Rare Disease: A Review with Recommendations and Calls to Action

et al. 2022

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“…11 In a separate survey, parents of CMC reported that their own health-related QoL was lower that than of other parents. 12 Lastly, we asked parents to think about their child' s health care and rate their level of agreement or disagreement with the statement, "I receive exactly what I want and need, exactly when and how I want and need it." Nearly all (89%) parents agreed or strongly agreed with this statement.…”

Section: Parent Perspectivesmentioning

confidence: 99%

Children With Medical Complexity: The 10-Year Experience of a Single Center

Murphy

Alvey

Valentine

et al. 2020

Hospital Pediatrics

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Children with medical complexity (CMC) have chronic, multisystem health conditions, substantial health care needs, major functional limitations, and high resource use. They represent ,1% of US children yet account for more than one-third of total pediatric health care costs. Health care systems designed for typical children do not meet the unique needs of CMC. In this special article, we describe the experience of our Comprehensive Care Program for CMC in a pediatric tertiary care center, from its launch in 2007 to its present model. We review the literature, describe our collective lessons learned, and offer suggestions for future directions.

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“…Parents of children with CMC must adhere to strict medical regimens (both treatments and preventative measures), travel to regular appointments, and their children rely heavily on them for their social, practical, and emotional needs (Cousino & Hazen, 2013;Foster et al, 2017). Parents must cope with complex aspects of their child's care in addition to managing ongoing fears of their child's medical condition worsening, which negatively impacts their health-related quality of life (Mann et al, 2019). Despite this concern, there is limited research on the mental health outcomes of caregivers of children with CMC.…”

Section: Introductionmentioning

confidence: 99%

A Scoping Review of Mental Health Programs for Parents of Children with Complex Medical Conditions

Kaminski¹,

Joyce²,

Simpson³

et al. 2021

Preprint

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Background: Medical care advancements have increased the survival rates of children with complex medical conditions (CMC). Parents/caregivers of these children experience a range of positive and negative emotional experiences as a result. This population experiences an increased risk of mental health concerns, versus the public; however, there is a dearth of available mental health interventions. Objectives: To summarize extant research on interventions targeting the mental health of parents/caregivers of children with CMC. Eligibility Criteria: Peer-reviewed, assessed parent/caregiver, child was 0-12 years old with a persistent CMC, participants received an intervention for their mental health, written in English, and published January 1, 2000 to May 19, 2020. Sources of Evidence: The PsycINFO, Medline, CINAHL, Web of Science, PubMED, and Social Services Abstracts databases were searched. Charting Methods: Articles were screened following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for scoping reviews and Arksey and O’Malley’s five-stage method of scoping reviews. Results and Conclusions: Nine studies were included, each assessing parent mental health and/or process and feasibility outcomes. Favorable reductions in depression, anxiety, stress, and an increase in quality of life, psychological flexibility, mindfulness, coping skills, and shared management were found; however, results were mixed. Parental support/education and parent education/child developmental supports appear important in the treatment of stress and quality of life, respectively. Parental stress interventions appear more effective when provided near the child’s CMC diagnosis. Findings highlight the need for further research to improve the mental health of parents of children with CMC.

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Health-Related Quality of Life and Family Functioning of Parents of Children with Medical Complexity

Cited by 7 publications

References 28 publications

Psychosocial Considerations for the Child with Rare Disease: A Review with Recommendations and Calls to Action

Psychosocial Considerations for the Child with Rare Disease: A Review with Recommendations and Calls to Action

Children With Medical Complexity: The 10-Year Experience of a Single Center

A Scoping Review of Mental Health Programs for Parents of Children with Complex Medical Conditions

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