Support requirements for caregivers of patients with palliative cancer

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Abstract

Health policy is shifting from professional to informal care. Studies have shown that informal caregivers provide an average of 55% of the needed care. The aim of this study was to get insight in the needs of the caregivers of patients with palliative cancer and how to address those needs with a support program. A questionnaire developed on the basis of 26 interviews was sent to 65 caregivers.

The respondents indicate that they do need support, that communication is considered the most important factor followed by practical information about nursing skills, the caregivers’ own health and finally social network. The respondents also expressed a need for support after the patient died during bereavement. Most respondents stated they wanted to participate in a support program at least partly together with the patient, at the patient's home and guided by a supporter who has experience with loss and is a professional.

Introduction

As patients are being discharged earlier from hospital, more and more of the responsibilities accompanying patient care are being carried out by family members and other “informal”, non-professional caregivers. Accordingly, health policies are being developed which reflect this shift in focus to make the needed amendments for deficiencies and shortcomings perceived and reported by researchers [1], [2], [3]. Studies show that 55% of patient cares is already being provided by informal caregivers [4].

Often the role of caregiver falls to a family member [5], [6]. Caregiving responsibilities are physically and emotionally challenging, especially for the person who has not had any specialized training for this role [7], [8]. This becomes particularly relevant when the patient must be taken care of for an extended period of time such as occurs in cases of multiple sclerosis, stroke, and palliative cancer. In this article the focus will be on the caregivers who take care of patients with palliative cancer.

Although cure rates for cancer patients are improving, there are still many with dire prognoses. The palliative phase is characterized by physical and emotional stress for the patient and for all those who are close to the patient. These physical and emotional stresses have been shown to result in increased mortality and morbidity for primary caregivers after the death of a loved one [9], [10], [11]. There are two aspects to stress, which are focused on in the literature. First, caregivers are suddenly confronted with a task involving nursing skills unfamiliar to them. Secondly, caregivers are confronted with psychological problems, which are in the background related to the patient's needs. Although caregivers will be able to learn the necessary nursing skills, they lack the professional distance of a nurse or a doctor and they are providing medical care for a loved one daily. This takes a psychological toll on the caregiver and may cause friction both in the caregiver and in the relationship between the caregiver and his/her patient [12].

The Dutch Ministry of Health, Welfare and Sports has initiated several Centra for Development of Palliative Care (CDPC). In one of these, the Pallas Project addresses the development, implementation, and evaluation of a psycho-educational support program for primary informal caregivers of patients with palliative cancer. During the start-up phase of the project in 2001, needs assessment research was carried out. Based on the literature, the following general research questions were formulated:

  • (1)

    What kind of support do caregivers need during the palliative phase?

  • (2)

    How should this care be organized?

Section snippets

Methods

To develop an understanding of the needs of the primary caregiver, two studies were carried out, one quantitative, the other qualitative. In depth interview forms the first part of the qualitative phase of the project. The goal was to interview people who were caring for or who had cared for patients with palliative cancer. Seventeen general practitioners were asked to inform us about caregivers in their practice, meeting these criteria. The result was a small study population of 10 caregivers,

Results

Of respondents 72% were women aged 46–65 years old. More than two thirds of respondents were either the spouse or the partner of the patient (70%); 28% of caregivers were related to the patient and only two percent of respondents were not family of the patient. More than one half of caregivers were the same age (46–65 years) as their patient (58%) (Table 1).

Conclusions

Caregivers indicated that they indeed do require support, in decreasing order of importance concerning ‘Communication’, ‘Practical Information’ [15], ‘Caregiver's Health’, and ‘Social Network’. Although it may seem obvious that social network support is important for the caregiver, our results downplay its significance as a factor.

Most respondents stated that they wanted to participate in the support program at least in part together with the patient, at the patient's home and guided by support

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