It is a marathon rather than a sprint: an initial exploration of unmet needs and support preferences of caregivers of children with SCI

Espino, Susan Ryerson; Kelly, Erin H.; Rivelli, Anne; Zebracki, Kathy

doi:10.1038/s41393-017-0022-6

Cited by 8 publications

(5 citation statements)

References 51 publications

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“…A complete handover was seen only in certain strength-related tasks. The results resonate with findings of other studies where family caregivers commonly needed help in time- and energy-consuming tasks ( Iecovich, 2011 ; Ryerson Espino et al., 2018 ). Professional home care provides strong relief in these tasks, especially in the case of spinal cord injury, where most often a female is taking care of a male care recipient.…”

Section: Discussionsupporting

confidence: 89%

Professional home care and the objective care burden for family caregivers of persons with spinal cord injury: Cross sectional survey

Jian-an

Barzallo

Rubinelli

et al. 2021

International Journal of Nursing Studies Advances

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Section: Discussionsupporting

confidence: 89%

Professional home care and the objective care burden for family caregivers of persons with spinal cord injury: Cross sectional survey

Jian-an

Barzallo

Rubinelli

et al. 2021

International Journal of Nursing Studies Advances

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“…I felt that my husband and I were the only ones taking responsibility for our son’s care and rehabilitation and that we did not have the right knowledge, information, or mandate. I did not understand my role and often felt like I was in a fight with the system instead of the system supporting us and similar experiences are described in the literature regarding other parents of children with SCI (1).…”

Section: Lost In the Wider Systemmentioning

confidence: 58%

“…Current research shows that caregivers of children with SCI describe stressful interactions with systems of care and the data suggest the need for ongoing caregiver interventions and strengthened family-centered care, including professional assistance navigating health systems and peer support (1). Using quality improvement and coproduction methods in which users and professionals work together to improve healthcare and social services (5), my research will aim to explore and improve the care in the everyday life of children with SCI by involving parents together with health and school professionals, among others.…”

Section: Using Experiences and Research To Improve The Carementioning

confidence: 99%

From Lost in the System to Empowered Parent-Researcher

Salmiranta

Josefsson

2021

Journal of Patient Experience

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Thrown Into a New WorldI used to live, what many would call, a normal life with 2 healthy sons and working full time as an information technology consultant. Six years ago, that life changed dramatically from 1 day to the next, when my youngest son, then aged 7 years, went from being an active boy to becoming totally paralyzed from his chest down. One Saturday evening, he started complaining of back pain. His right leg became numb and did not "wake-up" when my husband and I asked him to walk around the room. We went to the hospital and after a couple of hours in the emergency room, the staff told us to stay the night. The next morning, my son could no longer move his leg or empty his bladder. We panicked. Then everything happened very fast. After a magnetic resonance imaging examination, a neurologist told us our son had a cavernoma, a vascular malformation, in his spinal cord at the C4-6 level. He was moved to the intensive care unit and was surrounded by staff putting needles in him and connecting devices to him.My son was now completely paralyzed from his chest down and he could not feel or move anything below that level. He could not move his hands and had a hard time breathing. My husband and I struggled to figure out how to relieve his pain and fear. When the doctors told us that our son had a cavernoma, we thought he could be treated and cured. Three days later, we were taken to a room full of doctors and told our son had a permanent spinal cord injury (SCI) and that his legs would never support him again. I asked about his hands but got no reply. I remember how my legs started to shake uncontrollably trying to understand what all the people in the room were saying and what that meant for my son's life. I left that meeting feeling as if I was falling into a big black hole. I remember repeating a mantra in my head. "I must eat so I can be there for my son." "I must sleep/get dressed so I can be there for my son." "To be there for my son"-was the only thing that mattered.

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“…In Behrman et al ( 19 ), the caregiver was involved in the process when asked by the authors to respond to commentaries on their study; and her letter was presented in full on the journal’s homepage. In Rivelli et al ( 40 ), the reason caregivers were part of an advisory board was to inform the process. The capturing was through semi-structured interviews, as well as involvement in the process as caregivers were part of an advisory board and presenters at a parent forum.…”

Section: Resultsmentioning

confidence: 99%

The voice of caregivers of children and adolescents with spinal cord injuries: A scoping review

Salmiranta

Josefsson

Ockander

et al. 2023

The Journal of Spinal Cord Medicine

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Context: Participation in SCI research with caregivers of children and adolescents with spinal cord injury (SCI) can occur in a range of different ways. This review explores the extent to which caregivers' participation is connected to what might be called a voice. Objectives: To explore the voice of caregivers by collating available research with the participation of caregivers of children and adolescents with SCI, and synthesizing how the research has been conducted. Methods: The databases CINAHL, ERIC, MEDLINE, PsycInfo, and Scopus were searched for articles published between January 2008 and March 2022. Descriptive and narrative information was extracted and factors describing how caregivers participated were identified using an inductive approach. Results: Twenty-nine articles were identified, of which 28 had affiliations connected to the USA, and 25 to Shriners Hospitals for Children. In most of the articles, the caregivers were invited to participate in the research to complete or develop measures. Information from the caregivers was often captured using closestructured questions and summarized quantitatively with little or no exploration of the perspectives of the caregivers. Conclusion:The voice of caregivers of children and adolescents with SCI in research is limited by representativeness, the pre-determined emphasis, a lack of involvement in the process, and the reported narrative. By reflecting on voice, caregivers can have their experiences and perspectives acted upon to a greater extent to bring change, ultimately leading to improved care and health for children and adolescents with SCI.

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It is a marathon rather than a sprint: an initial exploration of unmet needs and support preferences of caregivers of children with SCI

Cited by 8 publications

References 51 publications

Professional home care and the objective care burden for family caregivers of persons with spinal cord injury: Cross sectional survey

Professional home care and the objective care burden for family caregivers of persons with spinal cord injury: Cross sectional survey

From Lost in the System to Empowered Parent-Researcher

The voice of caregivers of children and adolescents with spinal cord injuries: A scoping review

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