The contribution of caregiver and patient dyads to self-care in COPD: a mixed method study

Background: Chronic Obstructive Pulmonary Disease (COPD) is a chronic disease affecting 6% of Italians. The prevalence increases with ageing reaching up to 20% on 65 years and above. Self-care in COPD is important because improves disease management and quality of life, and reduces disease worsening. Besides the self-care of COPDpatients, care is provided by family members, especially on advanced disease stages. Patient and caregiver are called dyads on scientific literature. Dyads perform self-care and their behaviors are deeply interrelated. Few quantitative and qualitative studies have been conducted addressing the dyads of caregivers and COPD patients.No study has been conducted in Italy on this topic.

Aims: This research project aims at describing and understanding the self-care within the contest of caregiver-COPD patient dyads in Italy and identify factors that influence the dyadic relationship.

Methods: A mixed method explanatory sequential (quantitative/qualitative) design will be used. At the beginning, quantitative data will be explored to describe self-care on COPD dyads, stratified for disease severity and other variables. As a second step, dyadic or individual interviews will follow to explain significant information from quantitative data. As a last step, a mixed method analysis will follow.

Expected results: This study will investigate on self-care process of COPD dyads patient/caregiver and will provide a better understanding of self-care on COPD by patient-caregiver dyads and the extent of contribution of caregivers on self-care in this chronic disease.

Keywords: self-care, chronic obstructive pulmonary disease, mixed method research, patient and caregiver dyad.

Few studies have been conducted addressing the dyads of caregivers and COPD patients and the contribution of the caregivers to the self-care of COPD patients (Cruz et al., 2015).Thus, quantitative and qualitative studies on this topic are needed. Therefore, a mixed method research on caregivers’ contribution to the self-care on COPD patients and study of dyads will be carried out to provide useful information to health professionals caring for people with COPD

Study design

A mixed method explanatory sequential design will be used in order to obtain complementary data on self-care of COPD patients and the contribution of caregivers. In the explanatory sequential design, the researcher collects and analyzes quantitative data first and follows up on specific results with a second phase of qualitative data in order to explain the initial results in more depth (Creswell and Plano Clark 2011, p.82).

An observational-correlational design will be used to collect quantitative data; the initial data will be analyzed, and used to select the participants for the second phase of the study. A descriptive qualitative design will be used to collect qualitative data that will be analyzed to answer the qualitative and mixed method research questions. Quantitative and qualitative results will be interpreted and discussed together (triangulation) to define to what extent and in what ways qualitative results help to explain the quantitative results to give a better understanding of the phenomenon in study.

Data collection/Instruments

Data collection will take place from April 2017 to October 2018.

Quantitative research

The following instruments will be administered to patient and caregiver:

-          socio-demographic questionnaire created by researchers including age, marital status, employment, education, income, and disease severity.

-          Comorbidity index created by researcher for this study to identify other chronic diseases affecting  patients and caregivers;

-          PHQ-9 (Patient Health Questionnaire) which is self-reported questionnaire that considers the nine symptoms that contribute to the diagnosis of depression according to the DSM-IV. (Spitzer et al., 1999).

-          Generalized Anxiety Disorder scale (GAD-7) (Spitzer et al., 2006) developed as a self-reported scale to assess 7 common anxiety symptoms.

-          Mutuality Scale (MS) (Archbold et al., 1990) that is a 15-item, self-administered questionnaire that measures the quality of the relationship between the caregiver and care receiver);

-          Multidimensional Scale of Perceived Social Support (MSPSS) (Zimet et al., 1988) a 12 items tool designed to measure support from family, friends, and significant others;

-          Barthel Index that measures the extent to which a person can function independently in ten activities of daily living (ADL) (Mahoney and Barthel 1965);

-          Bristol COPD knowledge questionnaire (BCKQ) (White et al., 2006), a self-administered, multiple-choice questionnaire that measures the knowledge on COPD (White et al., 2006).

-          COPD Assessment Test (CAT) (Jones et al., 2009) assesses the impact of COPD on health status.

-          Dyadic symptoms management scale (Buck et al., 2012) which identifies four types of dyads in the symptom management: patient oriented, caregiver oriented, collaboratively oriented, and complementary oriented.

-          Caregiver Burden Inventory (CBI) (Novak et al., 1989) which consists in 24 items that measure the impact of providing care on various aspects of the caregiver’s life.

-          Montreal cognitive assessment (MoCA) (Nasreddine et al., 2005) that assesses cognitive status in different domains: attention and concentration, executive functions, memory, language, visual-constructional skills, conceptual thinking, calculations, and orientation;

-          Short Form 12 health survey (SF-12) (Ware et al., 1993) that measures general health status into mental and physical areas (PCS & MCS).

-          Self-Care In COPD Questionnaire (SCICOPD) created by researchers to measure the self-care behaviors. It was based on the theory of self-care of chronic illness of Riegel et al. (2012) and consists of three subscales evaluating self-care maintenance, self-care monitoring, and self-care management.

-          Self-Efficacy Scale, which measures the confidence of the person to take care of self and maintain the health status.

Questionnaires will be submitted to inpatients or outpatients and their caregivers.

Qualitative research

Semi-structured interviews will be conducted with the patient/caregiver dyad; individual interviews to patients or caregivers will follow to capture experiences of self-care on particular topics. The researcher will audiotape the interviews, and transcribe them verbatim.

The interviews will be conducted at the patient home or in hospital.

Participants and Sample

        COPD patient and caregiver dyads will be enrolled in different healthcare organization in Italy. Caregivers will be identified by asking patients to indicate which person they consider their primary caregiver.

     Inclusion criteriaof patients and caregivers are:

-          more than 18 years of age,

-          primary diagnosis of COPD at moderate (FEV1 79%-50%), severe  (FEV1 49%-30%) andvery severe (FEV1 < 30%) stages,

-          living in the community

-          both, patient and caregiver accept to participate to the study.

Exclusion criteria:

-          patients that do not have a primary caregiver,

-          family members and patients with cancer

-          family members and patients with cognitive impairment.

A convenience sample of 300 COPD patients and their respective primary caregivers (150 dyads) will be recruited at the identified clinical settings.

For the qualitative phase, approximately thirty dyads among the recruited 150 dyads will be interviewed together, until the saturation of data is reached. They will be selected based on the data collected in the quantitative phase. In particular, dyads representing the four types of dyadic management of symptoms model, or in which a correlation between specific variables is identified will be selected. Moreover, individual interviews (to caregivers or COPD patients) will be carried out to explore specific topics emerging from the previous interviews. The number of individual interviews can vary from 10 to 30 according to the contents to explore.

Data analysis

Quantitative data

Quantitative data will be analyzed with descriptive and inferential statistics using SPSS V.20.0. Descriptive statistics, including means, SDs, frequencies and medians, will be used, as appropriate. Moreover, we will calculate interclass correlation coefficients to study agreement between patients and caregivers. A priori, a two-sided level of significance will be set at p≤0.05.

Qualitative data

The qualitative data will be transcribed verbatim and analyzed with the content analysis methodology, through inductive analysis and using the ATLAS.ti software. This process of  analysis requires the repeated reading of the text in order to capture the meaning and sense of the all in order to identify meaningful units or categories “groups of verbatim with the similar meaning” (Graneheim et al., 2004), until various categories could be put together to create synthesized themes. All this work will be done by two researchers simultaneously until agreement for categories and themes is reached.

Mixed method analysis

Qualitative data will be combined with quantitative data and mixed interpretation will be done in order to depict a better and complete understanding of the self-care process in the patient-caregiver dyadic context.

Validity and reliability

Quantitative research

The researchers that will submit the questionnaires have received adequate training to assure the quality of data. The majority of questionnaires selected for this study have been validated in Italian, except Bristol COPD knowledge questionnaire that is undergoing validation in this study and self-efficacy scale and SCI COPD new created instruments by the researchers.

Qualitative research

Levels of credibility, rigor and transferability will be guaranteed through a rough description of the process of analysis and detailed description of the voices of participants. In order to give transferability of data, researchers will describe in details the context, selection of participants, the data gathering and analysis to guarantee the accuracy of results.

Ethical considerations

The informed consent will be asked in a written form to all participants. Detailed explanations will be given regarding the voluntary adhesion to the study explaining the risks and benefits, the reserved administration of data, the free retiring from the study at any moment. The data on participants will be saved in a secure place and with access only from researchers and no others.

In all phases of the study, participants will be identified by a numeric code in quantitative part and alphanumeric code on the qualitative part. Privacy will be protected by nicknames on the qualitative part of the research on the final report and publication.

Expected results

This study will provide a better understanding on self-care of COPD from the point of view of patient-caregiver dyads, on the contribution of the caregivers, and on the factor influencing the self-care in the dyadic relationship. This knowledge will help healthcare personnel to carry our personalized self-care education program.

Clinical Relevance

The results of this study will provide important indications for nursing practice. Understanding self-care behaviors of dyads on COPD will allow nurses to identify lack of knowledge and to actively involve the dyads in self-care process.

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