Care for carers: an investigation on family caregivers’ needs, tasks and experiences.

Care for carers: an investigation on family caregivers’ needs, tasks and experiences.

  1. English
  2. English

Activity details

Cancer is a family disease and the World Health Organization has recommended approaching patients and their caregivers as a ‘unit of care’. Family caregivers are essential health team members: they play a key role in the management of patients with cancer and provide some caregiving activities once provided only by professional caregivers. Often they are not adequately trained or prepared, however a systematic assessment of family caregivers’ needs is rarely practiced. Literature indicate that caregivers most frequently identify information and advice, financial assistance, respite care and assistance with personal care and technical daily tasks as areas where more support would be needed. This study was designed to better identify the needs and changes in the lifestyles of family caregivers of home cancer palliative care. We have developed a semi-structured qualitative interview and a standard Socioanagraphics form. Participants will also complete different questionnaires that measure caregivers’ experiences (the extent of cancer caregiving tasks and consequences) and their needs, mainly concerning the interaction with the health care professionals. We strongly believe that the assessment of caregivers’ needs is a critical step for determining appropriate support services, providing high quality care, achieving caregiver satisfaction, and decreasing caregiver burden. Indeed, the results will allow us to develop and publish Guidelines and to provide programmes and on-going education.
Action Group:
Objective:
Lead organisation name: 
Fondazione ANT Italia Onlus
Organisation country:
Contact person: 
Veronica Zavagli
Contact person email: 
veronica.zavagli@ant.it
Activity type:
Start date: 
05/04/2016
End date: 
30/06/2019
Geographic_coverage:
Last update: 18/12/2019

Current Status

Ongoing
- Study Sample and Procedure: Participants were enrolled in Italy among the caregivers of the patients assisted by the National Tumors Assistance (ANT). Our sample consists of 251 family caregivers of oncological patients assisted at home. Caregivers included in this study (I) are all living together with the patient; (II) are regularly providing care to their adult cancer patient at home since the time of diagnosis (by managing the symptoms/pain of the patient at home, giving personal care, supporting the patient in the house and hospital/bureaucratic settings and providing emotional support); (III) are not receiving any financial support for their caregiving work; and (IV) are 18 or older and played a key role in daily contact with physicians. All participants filled out a battery of self-report questionnaires that measure caregivers’ experiences (the extent of cancer caregiving tasks and consequences) and their needs, mainly concerning the interaction with the health care professionals. In addition, socio-demographic data were retrieved (sex, age, marital status, education level etc.) and participants gave informed written consent for participation to the investigation, data analysis and data publication. - Results: Frequencies, mean and standard deviation scores for each CaTCoN item were calculated. Simple correlations were used to assess the statistical link between caregivers’ tasks and needs and patients’ functional status. The results confirmed that cancer care-giving is burdensome. Large proportions of caregivers experienced substantial caregiving workload related to practical help (63%), personal care (73.1%), and emotional/psychological support (67.7%). Regarding the consequences caused by caregiving, 69.5% of caregivers reported lack of time for social relations and 81.3% referred to experience distress. The caregiving workload and the negative social consequences had a negative and significant correlation with the scores of ADL and IADL. Furthermore, considerable proportions of caregivers experienced problems or had unmet needs regarding the interaction with the health care professionals (HCPs). Prominent problematic aspects included the provision of enough information to the caregivers: 54% of the caregivers reported that not enough time had been spent informing them and that often they had to ask the HCPs questions in order to get the information they needed (45.2%). More than half of the participants, 60% and 67.3% respectively, referred that the HCPs only rarely/never or sometimes paid attention to them and had shown interest in their feelings. - Conclusion: The results confirm that cancer caregiving is burdensome and that being a caregiver is demanding and has its costs. These findings are in agreement with previous studies. This investigation can be viewed as guidance for determining appropriate support services, providing high-quality care, achieving caregiver satisfaction, and decreasing caregiver burden. Such results will certainly contribute to develop and publish Guidelines and to provide programmes and on-going education where caregivers feel supported in their role. In particular, it would be innovative to develop a suitable Smartphone application that reflects carers’ needs to support them in their role. Furthermore, investigations of this kind can urge legislators to recognize the caregivers’ figure and improve their role and status. For this purpose, it would be interesting to extend the investigation to different European countries and to get data from caregivers in varied contexts (including gender, age, and care-giving situations).

Results

Title Planned Deadline Current Status Category Attachments
Caregivers’ experiences 28/02/2019 Not achieved Research: Data (assessments/screenings/reviews/ data collections)
Abstract - CONFERENCE ON ACTIVE AND HEALTHY AGEING 2019 14/05/2019 Achieved Dissemination: Meetings, events, conferences PDF icon book_of_abstracts_aha_2019.pdf

Outcomes

Indicator Target indicator Current status
needs 200 160