Practices, Norms and Options: a Mixed Methods Study on the Efficacy of a

Support Group Programme for Cancer Caregivers

30 June 2014, University of SheffieldPresented by Huiying Ng

On behalf of the research team at the National University Hospital:

A/P Rathi MahendranA/P Konstadina Griva

Joanne ChuaHaikel LimJoyce Tan

Supported by National University Cancer Institute (Singapore) Seed Fund

Overview• Background: Conceptual Beginnings

• Context: Caregiving in Singapore

• Challenge #1: Finding a theoretical framework (and introduction to SDT)

• Methodology: Mixed Methods

• Challenges and Solutions Adopted

• Preliminary Findings

• Methodological Recommendations

Social Identity Theory

Prejudice

Discrimination

Conflict

Options & information

Insufficient structure

Lack of an “integrated and continuous social self”

Collective identity

Fulfillment Self-realisation

Individual identities

Habitus

Options

Norms

Caregiving in Singapore

• “Family” / “informal” caregivers

• Low public awareness of caregivers’ psychological support need

• Filial piety and family obligation

• Disinclination to speak about cancer

Self-determination Theory

Basic Psychologica

l Needs

Motivation

Competence

Autonomy

Relatedness

Research Aims

1. How a supportive social environment may assist caregivers in achieving better psychological resilience, namely through providing autonomy support, interpersonal involvement and a structured framework for caregiving

2. How these aspects of the social environment interact with caregiving motivations to result in psychological outcomes

3. The qualitative form that such a social environment would take.

Methodology

Quantitative Qualitative

Semi-structured interview

Pre-intervention•Challenges faced•Family support•Caregiving disruption to life goals•Expectations of group

Post-intervention•“What did you like or not like about the support group?”•Improvements•Met expectations?

Construct Measure

Caregiver Quality of Life and Burden

Caregiver Quality of Life-Cancer (CQOLC)

Caregiver Stress

Perceived Stress Scale (PSS)

Hospital Anxiety and Depression Scale (HADS)

Basic Psychological Needs

Basic Psychological Needs Scale (BPNS)

Perceived Competence

Perceived Competence Scale (PCS)

Perceived Autonomy Support

Healthcare Climate Questionnaire (HCCQ)

Perceived Relatedness

Interpersonal Support Evaluation List (ISEL)

Quantitative Measures

Construct Measure Reliability in previous samples

Caregiver Quality of Life and Burden

Caregiver Quality of Life-Cancer (CQOLC)

= .91 (Weitzner et al., 1999)

Caregiver Stress

Perceived Stress Scale (PSS)

Hospital Anxiety and Depression Scale (HADS)

= .91 (Sheldon Cohen & Janicki-Deverts, 2012)

= .76 (Lok & Bishop, 1999)

Basic Psychological Needs Basic Psychological Needs Scale (BPNS)

= .79 to .87 (Ilardi et al., 1993; Kasser, Davey, & Ryan, 1992)

Perceived Competence Perceived Competence Scale (PCS)

= .95; Williams et al., 1996)

Perceived Autonomy Support

Healthcare Climate Questionnaire (HCCQ)

= 0.80 (Williams, Freedman, & Deci, 1998)

Perceived Relatedness Interpersonal Support Evaluation List (ISEL)

= .81 (Scrignaro, Barni, & Magrin, 2011)

Thematic AnalysisTheoretical

understanding of motivations, basic

psychological needs

Review of dataset: Inductive coding of themes and codes

Fitting codes to theoretical framework

Challenges and SolutionsQualitative:1. Citing family ties as a reason for caregiving—not explicitly value-laden2. Citing filial obligation—which is value-laden—how do we decide if

someone is falling on the maladaptive side of a social norm?3. Choice to use semantic meanings rather than latent meanings

Mixed methods:4. People mention different motivations all across the duration of the

interview. How do we rank people by their level of motivation? 5. Goals: goal alignment, goal conflict, reprioritization, shifting goals, goals

are unclear. Can we code these into analyzable categories?6. How to relate personal goals to desires and motivation?

Ng, J. Y. Y., Ntoumanis, N., Thogersen-Ntoumani, C., Deci, E. L., Ryan, R. M., Duda, J. L., & Williams, G. C. (2012). Self-

Determination Theory Applied to Health Contexts: A Meta-Analysis. Perspectives on Psychological Science, 7(4), 325–340.

doi:10.1177/1745691612447309

Preliminary Findings

• Preliminary analysis focuses on motivations and cultural issues

• Does the group relate to better wellbeing?o Yes: group provides caregivers

with expert information, reminders of self-care tips, role models and downward social comparison, and an understanding that they are not alone.

o Yes; quantitatively, the group increased positive adaptation scores.

Pre Post22.5

23

23.5

24

24.5

25

25.5

26

Change in Positive Adaptation

ControlIntervention

Time

Positive Adaptation

Scale

Preliminary Findings

• How do our qualitative and quantitative findings complement each other?o Qualitative findings suggest that caregivers’ motivations for caregiving

may influence the benefits they draw from the group, as well as their support needs

o Motivations for caregiving fell under two broad categories: externally regulated motivations (FP or family obligations) and intrinsic motivation (pleasure of caring).

o Quantitatively, more internal motivations correlated with more positive outcomes and fewer negative outcomes

Motivations for caregiving

+ Basic Psychological

Needs

Pre-intervention

r = .856

+ Basic Psychological

Needs

Post-intervention

r = .910

+ Autonomy

+ Relatedness r = .969

r = .812

- Financial Concerns

- Stress r = -.917

r = -.799

Further steps

• Socio-cultural norms may interact with individual motivations to influence caregiver distress, the support they receive from the group, and improvements in outcomes.

• Norms? Caregiver post-intervention outcomes may relate to their initial levels of motivation

• Further analysis:o Qualitative benefits of the support groupo Relation of qualitative aspects with basic psychological needs (BPN)o Relation of qualitative aspects with caregiver outcomeso Relation of qualitative and BPN with caregiver outcomeso Interaction of qualitative aspects and motivations to affect outcomes

Thank you for listening!Questions?