The care of my child with cancer: A new instrument to measure caregiving demand in parents of children with cancer

Perfil Nutricional E Qualidade De Vida De Cuidadores De Crianças E Adolescentes Com Câncer

“…Esses cuidados intensivos tanto durante a internação hospitalar quanto nos períodos domiciliares podem trazer prejuízos a vários aspectos ligados à qualidade de vida (QV) do cuidador, como sono, lazer, alimentação, autoestima, entre outros [6][7][8][9] . No Brasil, não há disponibilidade de instrumentos validados e específicos para aferir a QV de cuidadores de crianças e adolescentes portadores de câncer 8,10 . Nesses casos, pode ser útil a aplicação de instrumentos genéricos, como o 36-Item Short-Form Health Survey (SF-36), que foi validado e adaptado culturalmente para a população brasileira em 1999.…”

Caregiving Demands and Well-being in Parents of Children Treated With Outpatient or Inpatient Methotrexate Infusion

“…The Care of My Child with Cancer (CMCC) 8 is a 28-item scale that measures both the time required and the degree of effort or difficulty of certain care-giving tasks completed by family members in the previous week as part of the care given to their child with cancer. Items are listed under broad content domains.…”

“…Items are listed under broad content domains. Initial factor analysis revealed two subscales, physical and emotional caregiving 8 . Item scores for time/effort range from 1 (no time or no effort – meaning the caregiving task was not completed by the parent) to 5 (more than 5 hours in the last week or a great deal of effort).…”

“…Total scores range from 0 to 112. In several studies the CMCC demonstrated acceptable test-re-test (r=0.90), internal consistency (Cronbach’s alpha=0.92–0.93) and construct validity (increased demand associated with more intense treatment and poorer child and parent QOL) 4, 8, 9 . The median completion time of the CMCC is 10 minutes.…”

Caring for Children With Life-Threatening Illnesses: Impact on White, African American, and Latino Families

“…There are currently 16.8 million unpaid caregivers providing care to these children, and a recent study reveals one-half of CSHCN were assisted by caregivers with at least one activity of daily living related to the child’s medical conditions (Caregiving & AARP, 2009). Most assistance is provided in dressing, bathing, and mobility, however, some caregivers are also being expected to provide more in-home intensive treatments, such as administering intravenous medications to their children (Wells et al, 2002). Family caregivers report spending an average of 30 hours per week caring for their child’s illness, and almost 40% of caregivers surveyed report being in high burden situations based on level of care provided (Caregiving & AARP, 2009).…”