Document Type : Original Article

Authors

Department of Nursing, School of Nursing and Midwifery, Shahrekord University of Medical Sciences, Shahrekord, Iran

Abstract

Background: Heart failure is incurable disease and patients often have an ongoing decline once
diagnosed. The symptoms of heart failure may impair the ability of patient to perform activities of
daily living. As heart failure progresses, patients normally increase their reliance on family caregivers.
Aims: This paper explored the informational needs and related problems of family caregivers of heart
failure patients as a part of the findings of a study exploring experiences of family caregivers in the
caregiving situation. Setting and Design: Using a qualitative design, 19 family caregivers from three
educational hospitals in Isfahan, Iran, were recruited. Materials and Methods: Participants were
selected by purposive sampling. Data were collected through semi‑structured interviews. Interviews
were transcribed verbatim and analyzed concurrently. Results: Four major themes were emerged
from the analysis of the transcripts: “Lack of care‑related knowledge”, “Inaccessibility to responsible
source of information”, “Lack of guidance from healthcare team” and “caring with ambiguity due to
unpredictable nature of the disease”. Caregivers believed that they did not have the basic knowledge
related to disease and medication administration. They received little guidance and support from
the health care team on the caregiving roles. They experienced high level of ambiguity and stress
in caregiving tasks due to lack of care‑related knowledge and unpredictable nature of disease.
Conclusion: The care, which was performed by the caregivers of HF patients, is beyond of their
knowledge, capabilities, and resources. Nurses and other healthcare providers can use the findings
of this study to develop effective educational and supportive programs to facilitate these needs.

Keywords

1. Hunt SA, Abraham WT, Chin MH, Feldman AM, Francis GS,
Ganiats TG, et al. ACC/AHA 2005 guideline update for the diagnosis
and management of chronic heart failure in the adult a report of
the American College of Cardiology/American Heart Association
Task Force on Practice Guidelines (Writing Committee to Update
the 2001 Guidelines for the Evaluation and Management of Heart
Failure): Developed in collaboration with the American College of
Chest Physicians and the International Society for Heart and Lung
Transplantation: Endorsed by the Heart Rhythm Society. Circulation
2005;112:e154‑235.
2. Clark AM, Savard LA, Spaling MA, Heath S, Duncan AS, Spiers JA.
Understanding help‑seeking decisions in people with heart failure:
A qualitative systematic review. Int J Nurs Stud 2012;49:1582‑97.
3. Hwang B, Luttik ML, Dracup K, Jaarsma T. Family caregiving for
patients with heart failure: Types of care provided and gender
differences. J Card Fail 2010;16:398‑403.
4. Hekmatpou D, Mohammadi E, Ahmadi F, Arefi S. The effectiveness
of applying “Making Sensivity to Re‑admission Caring Model”
on controlling congestive heart failure complications among
hospitalized patients in Tehran cardiovascular centers. Med J Iran
Univ 2009;17:33‑49.
5. Jeon YH, Kraus SG, Jowsey T, Glasgow NJ. The experience of living
with chronic heart failure: A narrative review of qualitative studies.
BMC Health Serv Res 2010;10:77.
6. Molloy GJ, Johnston DW, Witham MD. Family caregiving and
congestive heart failure. Review and analysis. Eur J Heart Fail
2005;7:592‑603.
7. Pressler SJ, Gradus‑Pizlo I, Chubinski SD, Smith G, Wheeler S,
Wu J, et al. Family caregiver outcomes in heart failure. Am J Crit
Care 2009;18:149‑59.
8. Saunders MM. Factors associated with caregiver burden in heart
failure family caregivers. West J Nurs Res 2008;30:943‑59.
9. Dunbar SB, Clark PC, Quinn C, Gary RA, Kaslow NJ. Family
influences on heart failure self‑care and outcomes. J Cardiovasc
Nurs 2008;23:258‑65.
10. Bakas T, Pressler SJ, Johnson EA, Nauser JA, Shaneyfelt T. Family
caregiving in heart failure. Nurs Res 2006;55:180‑8.11. Rahnavard Z, Zolfaghari M, Kazemnejad A, Hatamipour, K. An
investigation of quality of life and factors affecting it in the patients
with congestive heart failure. J Fac Nurs Midwifery Tehran Univ
Med Sci 2006;12:77‑86.
12. Rafii F, Shahpoorian F, Naasher Z, Azarabaad M, Hosseini F. The
importance of learning needs of congestive heart failure patients
from patients’ and nurses’ perspective. Iran Nurs J 2009;22:19‑30.
13. Habibollahzade H, Baghaei R, Abolfathi L, Gasemzade P. Study
on causes of heart failure and evaluation of knowledge and
attitude towards the disease. J Med Counc Islam Repub Iran
2001;19:85‑9.
14. Walden JA, Dracup K, Westlake C, Erickson V, Hamilton MA,
Fonarow GC. Educational needs of patients with advanced heart
failure and their caregivers. J Heart Lung Transplant 2001;20:766‑9.
15. Clark AM, Freydberg CN, McAlister FA, Tsuyuki RT, Armstrong PW,
Strain LA. Patient and informal caregivers’ knowledge of heart
failure: Necessary but insufficient for effective self‑care. Eur J Heart
Fail 2009;11:617‑21.
16. Hupcey JE, Fenstermacher K, Kitko L, Fogg J. Palliative needs of
spousal caregivers of patients with heart failure followed up at
specialized heart failure centers. J Hosp Palliat Nurs 2011;13:142‑50.
17. Pinquart M, Sörensen S. Ethnic differences in stressors, resources,
and psychological outcomes of family caregiving: A meta‑analysis.
Gerontologist 2005;45:90‑106.
18. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res
Psychol 2006;3:77‑101.
19. Corbin G, Strauss A. Basics of qualitative research: Techniques
and Procedures for developing grounded theory. London: Sage
Publisher; 2008.
20. Denzin N, Lincoln Y. Handbook of qualitative research. London:
Sage Publisher; 2005.
21. Luttik ML, Jaarsma T, Veeger N, Tijssen J, Sanderman R, van
Veldhuisen DJ. Caregiver burden in partners of Heart Failure
patients; limited influence of disease severity. Eur J Heart Fail
2007;9:695‑701.
22. Fukui S. Information needs and the related variables of Japanese
family caregivers of terminally ill cancer patients. Nurs Health Sci
2004;6:29‑36.
23. Cox A, Hayter M, Ruane J. Alternative approaches to ‘enhanced
observations’ in acute inpatient mental health care: A review of
the literature. J Psychiatr Ment Health Nurs 2010;17:162‑71.
24. Salehitali SH, Dehkordi AH, Hafshejani SM, Jafarei A. The effect
of continuous home visits and health education on the rate of
readmissions, referrals, and Health Care Costs among Discharged
Patients with Heart Failure. HAYAT 2010;15:43‑9.
25. Given B, Sherwood PR, Given CW. What knowledge and skills do
caregivers need? Am J Nurs 2008;108 Suppl 9:28‑34.