Thematic analysis of the experience of making a decision to place a family member with Alzheimer's disease in a special care unit¶

Abstract

The purpose of this study was to provide an in-depth description of the experience of making the decision to place a family member in a special care unit among a diverse sample of family caregivers. To achieve purposive maximum variation of the sample, the sample of 30 family caregivers was chosen from an original study of 256 family caregivers. The sample was randomly stratified according to ethnicity, gender, and relationship to the care receiver. Three independent researchers used Luborsky's method of thematic analysis to analyze the interviews. After mutual consensus, 1565 themes (descriptive statements) were identified and synthesized into 21 topics. The topics were then synthesized into four patterns describing the decision-making experience: moving toward the unavoidable decision, struggling with the decision, seeking reassurance, and remaining connected.

A systematic review of barriers and facilitators to and interventions for proxy decision-making by family carers of people with dementia

“…Emotional impact of decision-making on family carers Many carers struggled to decide whether to move their relative into a nursing home and experienced anguish and guilt (Butcher et al, 2001). Two studies asked focus groups of family carers making decisions for people with dementia which decisions were the most difficult, and in both deciding about longterm placement was identified.…”

“…Carers report a shift in the dynamic to a "mother/child" type relationship and Table 4. Summary of triggers, barriers, and facilitators to decision-making (Butcher et al, 2001;Ducharme et al, 2012) Desire to honor person with dementia's wishes (Elliott et al, 2009) Family and professionals perspectives (Livingston et al, 2010;Ducharme et al, 2012) Carer unable to cope and care/ deterioration in carer health (Cohen et al, 1993;Caron et al, 2006;Ducharme et al, 2012) Emotional impact (anguish, burden guilt) (Butcher et al, 2001;Livingston et al, 2010) Support from others once decision made (Butcher et al, 2001) Change in living environment (Caron et al, 2006) Resistance from person with dementia (Livingston et al, 2010;Chrisp et al, 2012;Wolfs et al, 2012;Chrisp et al, 2013) Relationship to person with dementia (Wackerbarth, 1999) Person with dementia's ability to make decisions (Caron et al, 2006) Barriers to accessing services/lack of support/information (Wackerbarth, 1999;Butcher et al, 2001;Livingston et al, 2010) Adapting caring role following a decision (Kwon and Tae, 2012) Cultural treachery and distress (Chang and Schneider, 2010;Chang et al, 2011;Kwon and Tae, 2012) Collaborating with healthcare professionals (Walker and Dewar, 2001;Heinrich et al, 2003;Torke et al, 2013) Role change to "mother/child" (Cairns, 2012) Mild to moderate dementia severity (Smebye et al, 2012) Knowing when the "right" take to ...…”

“…Feelings of guilt and distress carers experienced having decided to move their relative into a care home were exacerbated by perceived lack of support which could sometimes hinder decision-making (Butcher et al, 2001). Coetzee et al (2003) found clinicians valued less "active" treatment approaches than carers; carers valued patients' wishes, best interests, and dying with dignity more than professionals.…”

Substituted Judgment: The Limitations of Autonomy in Surrogate Decision Making

“…There is evidence that families feel a tremendous burden when making life and death decisions for a loved one. [41][42][43][44][45] An appeal to substituted judgment may remove some of the burden, by framing the decision as the patient's own choice rather than the surrogate's. When a family is in dispute with each other or with physicians about a decision for an incompetent patient, an appeal to substituted judgment can also change the focus of the discussion from the desires of the family members to those of the patient.…”

Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK

“…4 5 Decision making will differ according to previous experiences, education, and social and cultural background. 6 Some people seek information, whereas others do not. 7 All are facilitated in making decisions if they have access to good information and support.…”