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family needs

The Burden of Primary Caregivers of Spinal Muscular Atrophy Patients and Their Needs

Aim: This study aims to reveal the problems faced by families of children with spinal muscular atrophy (SMA), by evaluating their care burden, needs, and expectations. Materials and Methods: The participants were the primary caregivers of 34 children between the ages of 0 and 18 years diagnosed with SMA. Thirteen children were diagnosed with type 1, 13 children with type 2 and 8 children with type 3 SMA. Data on the medical history, functional levels of the participants, and the characteristics of families were collected.

Sat, 01/15/2022 - 13:55

The experiences and needs of relatives of intensive care unit patients during the transition from the intensive care unit to a general ward: A qualitative study

Background: Relatives of intensive care unit (ICU) patients play an important role as caregivers and can experience emotional distress, also referred to as post-intensive care syndrome-family. A deeper understanding of what relatives go through and what they need may provide input on how to strengthen family-centred care and, in the end, contribute to the reduction of symptoms of post-intensive care syndrome-family. Method: This is a qualitative descriptive study with semistructured face-to-face interviews after ICU transfers.

Mon, 03/22/2021 - 11:01

The Family Needs Questionnaire-Revised: a Rasch analysis of measurement properties in the chronic phase after traumatic brain injury

The main aim was to evaluate the measurement properties of the Family Needs Questionnaire-Revised (FNQ-R) in family members of individuals living with severe traumatic brain injury (TBI). A total of 309 family members of individuals with severe TBI from Colombia, Denmark, Mexico, Norway and Spain participated. Rasch analysis of the FNQ-R and its 6 subscales was conducted. The Rasch analysis indicated a lack of fit of the 37-item FNQ-R to one single underlying construct of needs, and less than half of the items were invariant across the countries.

Sat, 01/23/2021 - 15:25

The third person in the room: the needs of care partners of older people in home care services - a systematic review from a person-centred perspective

AIMS AND OBJECTIVES: To identify and synthesise the needs of care partners of older people living at home with assistance from home care services., BACKGROUND: "Ageing in place" is a promoted concept where care partners and home care services play significant roles. Identifying the needs of care partners and finding systematic ways of meeting them can help care partners to cope with their role., DESIGN/METHODS: This study is based on the PRISMA reporting guidelines.

Fri, 04/12/2019 - 16:27

Being we and being me: Exploring the needs of Austrian families with caring children

Children and adolescents with caring responsibilities are an uncontested reality in our society. Most are hidden from public view, and they perform a broad range of caring activities for chronically ill or disabled family members. The research literature has accumulated a comprehensive body of knowledge about young carers’ personal needs. However, knowledge and understanding are limited regarding the needs of young carers’ families. This knowledge can contribute to preventing children and adolescents from assuming inappropriate caring roles.

Wed, 10/31/2018 - 16:17