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19 Knowledge requirements and unmet needs of informal caregivers of patients with end-stage kidney disease (ESKD) receiving haemodialysis
  1. Michael Matthews,
  2. Joanne Reid,
  3. Clare McKeaveney and
  4. Helen Noble
  1. School of Nursing and Midwifery, Queen’s University, UK


Introduction Even though informal carers play a crucial role in the daily management of patients with ESKD receiving haemodialysis they have consistently received little attention in both research and practice. It is necessary to identify their needs and knowledge requirements, so that educative and supportive programs can be developed to assist them in their caring role.

Aims To ascertain informal caregivers’ knowledge regarding the care they provide.

Explore how knowledge has impacted on informal caregivers’ ability when providing care to patients with ESKD receiving haemodialysis.

Identify the needs of informal caregivers of patients with ESKD receiving haemodialysis.

Method A systematic search using the search terms and index terms related to informal carers was conducted. Two methods were used to search for appropriate literature: database searching and citation searching. Databases searched included: Web of Science, PsycINFO, Embase, Medline and CINAHL from February 2010 until February 2020.

Results Several themes and associated sub-themes were identified:

Theme 1

Provision of information to assist informal caregivers in providing care.

Related Sub-Themes

  • Informal caregivers’ access to and provision of sources of knowledge relating to managing patient symptoms.

  • Skills provision for informal carers of patients through educational strategies.

  • The importance of self–care in a caregiving role.

Theme 2

Factors associated with psychological wellbeing in informal caregivers of people on haemodialysis.

Related Sub-Themes

  • Potential causes of stress when providing informal care.

  • Spiritual and religious considerations used to cope with psychological consequences of caring.

Theme 3

Caregiver burden as described by informal caregivers of patients undergoing haemodialysis treatment.

Related Sub-Themes

  • Relationship between caregiving duties and degree of caregiver burden.

  • Relationship between caregiver burden and quality of life.

  • Effect of informal caregiving on marital relationships.

Conclusion A deeper insight is required into the experiences of informal carers to identify what would assist and benefit them in their caregiving role. Although most research studies in this review highlight the difficulties and challenges faced by informal caregivers such as lack of knowledge and skills and lack of information provided by healthcare professionals, there is scant information offered as to what support mechanisms would be most beneficial to caregivers to address their needs.

Impact This systematic review has highlighted several gaps in the current research around the knowledge and informational needs and skills required by informal carers, thus necessitating the development of a supportive intervention to support them in their caring role.

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