Luker, K., Cooke, M., Dunn, L., Lloyd-Williams, M., Pilling, M., & Todd, C. (2015). Development and evaluation of an intervention to support family caregivers of people with cancer to provide home-based care at the end of life: A feasibility study. European Journal of Oncology Nursing, 19, 154–161.

DOI Link

Study Purpose

To design and evaluate an intervention to address caregiver information and needs when providing end of life care, and to evaluate the intervention for acceptability among caregivers and healthcare professionals, assessing the feasibility of healthcare workers adopting this as daily practice, and assessing its impact on caregiver burden, satisfaction, competence, and preparedness

Intervention Characteristics/Basic Study Process

The study was divided into two interventions. Phase 1 was comprised of interviewing caregivers about the need for practical information, support skills, and their preference on the form in which information should be delivered (identified as a booklet). Phase 2 evaluated the booklet used through validated questionnaires.

Sample Characteristics

  • N = 31 (phase 2)
  • MEAN AGE = 62 years (range = 31–82 years) 
  • MALES: 26%, FEMALES: 74%
  • KEY DISEASE CHARACTERISTICS: Patients were in their last year of life.
  • OTHER KEY SAMPLE CHARACTERISTICS: All participants were aged greater than 18 years, and caregivers lived in the home with patients.

Setting

  • SITE: Community home-based palliative care
  • SETTING TYPE: Hospice and palliative care
  • LOCATION: United Kingdom

Phase of Care and Clinical Applications

  • PHASE OF CARE: End of Life
  • APPLICATIONS: Palliative care

Study Design

This was a mixed-method feasibility study with a convenience sample. Quantitative surveys were collected at recruitment and four to six weeks after initial recruitment. Qualitative data using semistructured interviews and structured personal diaries, logs, and interviews were collected.

Measurement Instruments/Methods

  • Family Appraisal of Caregiving Questionnaire (FACQ)
  • Caregiver Competence Scale (CCS)
  • Preparedness for the demands and tasks of caring (eight items)
  • Hospital Anxiety and Depression Scale (HADS)
  • Short Form 12 v2 (SF-12) Health Survey
  • A single-item Likert scale of perceptions of patient symptom management (I feel I can manage my family member’s/friend’s symptoms)

Results

This study highlighted the benefit of caregiver education and support. Caregivers found the booklet acceptable and were positive about the information provided in the booklet. Caregivers identified that receiving the booklet earlier in the disease process was beneficial. Caregivers reported feeling empowered by the information in the booklet, and identified that it did provide reassurance and improve their competency in the caregiver role. In the second phase, nurses identified that they received fewer calls from caregivers who received the intervention compared to the usual care group. In the quantitative data, the only statistically significant finding was on the positive caregiving Subscale of the FACQ. 

Conclusions

This study demonstrated benefits from the booklet intervention on caregivers’ appraisal of caregiving. In addition, the study highlighted practical issues regarding the timing of the intervention delivery. A randomized control trial would be more effective in furthering the initial positive results identified by this study.  

Limitations

  • Small sample (< 30)
  • Baseline sample/group differences of import
  • Risk of bias (no control group)
  • Risk of bias (no blinding)
  • Risk of bias (no random assignment) 
  • Risk of bias (no appropriate attentional control condition)
  • Unintended interventions or applicable interventions not described that would influence results
  • Measurement/methods not well described
  • Questionable protocol fidelity
  • Other limitations/explanation: As a feasibility study, it was not powered to detect statistic significance. A major limitation was the intervention focused on support for provision of care. There was low nursing participation .

Nursing Implications

Additional effort should be made to adopt an intervention like this into everyday practice to improve both patient and caregiver quality of life outcomes. Nurses can assist in identifying at-risk caregivers earlier in the disease trajectory so the intervention can be initiated earlier on in palliative care.