Qualitative studies - Methodologies of included studies

DEMENTIA: A SYSTEMATIC REVIEW OF THE LITERATURE

2.3.2. Methodologies of included studies

2.3.2.1 Qualitative studies

I defined qualitative research as “a field of inquiry applicable to many disciplines and topics that aim to gather an in-depth understanding of human behaviour and the reasons that govern such behaviour” (Denzin and Lincoln, 2000). Only one study employed qualitative methods alone (Forbes et al., 2000) in the initial review. In their study Forbes et al used focus groups to describe family decision making

65 Figure 2.2 A timeline of included papers

1991 Finucane et al

1996 Mezey et al

1999 Fazel et al UK

2000 Fazel et al UK

Forbes et al 2002 Cavalierri et al

2004 Hirschman et al

Haydar et al

2005 Rurup et al

2006 Lacey

Hirschman et al Caplan et al

2007 Gregory et al UK

Karel et al

2008 Lingler et al

Hirschman et al Triplett et al

2011 Sampson et al UK

Vandervoort et al Gerand et al

2012 Harrison Dening et al UK

Livingston et al UK

Ayalon et al

2013 Poppe et al UK

Dickinson et al UK

Goodman et al UK

De Gendt et al

Robinson et al UK

Livingston et al UK

66 processes in each of four participating care facilities (Table 2.1). Content thematic analysis was used to describe and synthesise data from qualitative studies.

The update to this review in December 2013 revealed a further five qualitative studies (Table 2.1). A range of methods were used to collect data including focus groups (Robinson et al., 2013), interviews (Livingston et al., 2012; Dickinson et al., 2013; Poppe et al., 2013; Robinson et al., 2013) and guided conversations (Goodman et al., 2013). Three papers are from the same group of authors who have described different samples from the same dataset or programme of research but are included as two separate contributions (**see table 2.1).

Most of the qualitative studies aimed to understand factors that influenced advance care planning from the perspectives of PWD, family carers and professionals involved in their care.

67 Table 2.1 Studies using qualitative methodologies

Paper Aims Methodology Tools used

NA None Nursing homes Complexities and processes that

Paper Aims Methodology Tools used

shortly after diagnosis. 25 carers

150 staff

Note: ACP = Advance Care Planning; CPS = Cognitive Performance Scale; PWD = people with dementia; Mini Mental State Examination; ACP-ED = Advanced Care Planning in Early Dementia; DDS = Disability and Dementia Scale. Studies below line were retrieved during the second literature search

69 2.3.2.2 Quantitative studies

We defined quantitative studies “the systematic, scientific investigation of quantitative properties and phenomena and their relationships” (Parahoo, 2010).

The objective of quantitative research is to develop and employ mathematical models, theories and/or hypotheses pertaining to natural phenomena. The process of measurement is central to quantitative research because it provides the fundamental connection between empirical observation and mathematical expression of quantitative relationships (Parahoo, 2010).

Of the studies that employed only quantitative methods (n = 15) 11 were retrieved in the search up to March 2010 and four subsequently up to December 2013 (Table 2.2). Four used control or comparative groups (Caplan et al., 2006; Cavallieri et al., 2002; Fazel et al., 1999, 2000; Haydar et al., 2004). One study by Cavallieri et al.

(2002) surveyed primary care physicians to explore whether ACP discussions were being held. Two studies compared those with dementia with participants who were cognitively intact (Fazel et al., 1999; 2000) and one compared PWD to those with congestive cardiac failure (Haydar et al., 2004). Caplan et al. (2006) undertook a controlled evaluation of advance care planning in care homes.

Other methods employed were cross sectional study (Gregory et al., 2007; Lingler et al., 2008; Lacey, 2005; Rurup et al., 2006). Gregory et al. (2007) used this methodology to determine if the degree of an individuals’ cognitive impairment related to their capacity to appoint an enduring power of attorney. Lingler et al.

(2008) used a retrospective cross sectional method using semi-structured interviews of people with a cognitive impairment to assess prevalence of advance care planning. Two studies (Lacey, 2005; Rurup et al., 2006) used survey or questionnaire based studies to explore attitudes and perceptions of professionals.

70 Two studies examined prevalence of advance care plans and advance directives (Garand et al., 2011; Triplett et al., 2008). Triplett et al. used a prospective longitudinal study of case records to examine the prevalence of advance directives.

Garand et al. (2011) undertook a retrospective analysis of the increase in prevalence of ACP over time in a sample of 127 people with a diagnosis of mild cognitive impairment (MCI) or Alzheimer’s disease. Mezey et al. (2000) conducted a prospective study interviewing carers of PWD to determine preferences about life sustaining treatment options. Two Belgian studies used retrospective cross sectional methods to examine the prevalence of advance directives in nursing homes and clinical characteristics of deceased patients (De Gendt et al., 2013;

Vandervoort et al., 2012). Finally, in an Israeli study, Ayalon et al. (2012) used a cross sectional sample of 53 couples to evaluate the degree of agreement for end of life treatment between the patients’ preferences and those of their spouses.

71 Table 2.2 Studies using quantitative methodologies

Paper Aims Methodology Tools used

Primary care Practice patterns for advance care

Nursing home Staff attitudes and knowledge of end-life-decisions.

Paper Aims Methodology Tools used

NA None Nursing home Documentation of advance directives

Paper Aims Methodology Tools used

NA None Nursing Homes Prevalence of Advance Directives in relation to clinical characteristics and care received.

Note: CPS = Cognitive Performance Scale. MMSE = Mini Mental State Examination. ADL = Activities of Daily Living. IADL = Instrument of Activities of Daily Living. SCB = Screen for Caregiver Burden. CDR = Clinical Dementia Rating. NART = National Adult Reading Test. DRG = Diagnosis Related Group. TICS = Telephone Interview for Cognitive Status. GDS = Geriatric Depression Scale¹. BSI = Brief Symptom Inventory. DDSQ = Dementia Diagnostic Screening Questionnaire. HSQ = Health Screening Questionnaire. GDS² = Global Deterioration Scale. BI = Burden Inventory. BAN-S = Bedford Alzheimer nursing severity sub-scale. NINCDS-ADRDA = National Institute of Neurological and Communicative Disorders and Stroke – Alzheimer’s disease and Related Disorders Association criteria. ADRC = Alzheimer’s disease Research Centre. MCI = Mild Cognitive Impairment. Katz ADL = Katz Activities of Daily Living.

BESADL = Belgian Evaluation Scale for Activities of Daily Living. ESAS = Edmonton Symptom Assessment Scale. AD = Advance Directives.

Studies below line were retrieved during the second literature search

* Two papers reporting from the same study

75 2.3.2.3 Mixed method studies

Eight studies used a mixed method approach using both quantitative and qualitative elements. For the purposes of this thesis, mixed methods research is defined as “a research approach that employs quantitative research to assess the magnitude and frequency of constructs and rigorous qualitative research to explore the meaning and understanding of such constructs” (Johnson et al., 2007).

Five studies were retrieved in the initial search (Finucane et al., 1991; Hirschman et al., 2004; 2006; Karel et al., 2007) and three in the second (Sampson et al., 2011;

Harrison Dening et al., 2012; Livingston et al., 2013) (Table 2.3).

Finucane et al. (1991) used semi-structured interviews to determine whether asking PWD specific questions about hypothetical future illness was burdensome to them and then to measure the consistency of responses over time. He also interviewed carers to identify any distress of PWD or carers caused by the interview process.

Hirschman et al. (2004) employed a prospective observational cohort study recruiting dyads of PWD and their carers to observe changes in decision making over time. In a second study Hirschman et al. (2006) used semi-structured interviews with family carers to determine current decision making and past healthcare discussion experiences employing both qualitative and quantitative methods of analysis. In a third study Hirschman et al. (2008) again conducted semi-structured interviews to identify what standard of decision making was employed in the same target population and again, used both qualitative and quantitative methods of analysis. Karel et al. (2007) used a non-randomised control methodology using cognitively intact people as the control group to explore potential benefits and pitfalls of approaches for values assessment in advance care planning.

Part of the process involved a semi-structured interview schedule and thematic content analysis of the data.

76 In the studies retrieved in the second literature search, Sampson et al. (2011) piloted an exploratory randomised controlled trial of a palliative and advance care plan intervention for people with severe dementia admitted to acute hospital care (n

= 33). The intervention comprised a palliative care assessment to inform ACP discussions with the family carer. Carer-patient dyads were randomised into ‘usual care’ or the intervention. Both quantitative and qualitative methods were used to develop the intervention. Livingston et al. (2013) conducted a small non-randomised study of an interactive training intervention for nursing home staff. The outcomes examined were documented advance care wishes and residents’ place of death.

They also conducted a thematic review of pre- and post-intervention interviews.

Finally, I undertook a mixed methods study using a modified nominal group technique (NGT) and thematic content analysis of group discussions to explore whether PWD (n = 9) and carers (n = 8) were able to generate and prioritise preferences for end of life care (Harrison Dening et al., 2012, described in detail in Chapter 3 of this thesis).

77 Table 2.3 Studies using mixed methodologies

Paper Aims Methodology Tools used

Community The use of values clarification in

Paper Aims Methodology Tools used

Depression Scale¹. BSI = Brief Symptom Inventory. DDSQ = Dementia Diagnostic Screening Questionnaire. HSQ = Health Screening Questionnaire. GDS² = Global Deterioration Scale. BI = Burden Inventory. BAN-S = Bedford Alzheimer Nursing Severity sub-scale. NINCDS-ADRDA = National Institute of Neurological and Communicative Disorders and Stroke – Alzheimer’s Disease and Related Disorders Association criteria. HCVS: FCI = Health Care Values Survey: Forced Choice Items. HCVSI = Health Care Values Scale Items. FAST = Functional Assessment Staging Tool. ACP = Advance Care Planning. CAF = Confusion Assessment Method. PACSLAC = Pain Assessment Checklist for Seniors with Limited Ability to Communicate. K10 = Kessler Distress Scale. EQ-5D = Euroqual-5D. DCS = Decision Conflict Scale. DSI – Decision Satisfaction Inventory. SAS = State Anger Scale. LSQ = Life Satisfaction Scale. SWC = Satisfaction with End of Life Care in Advanced Dementia Scale. CSQ = Carer Strain Questionnaire. QoL-AD = Quality of Life in Alzheimer’s Disease. GHQ – General Health Questionnaire.

Studies below line were retrieved during the second literature search

80 2.3.3 Samples

Sample sizes varied greatly (range 6 – 1240). The smallest sample used a mixed method approach involving interviews with six dyads of PWD and their carer (Finucane et al., 1991) and the largest involved 1240 residents across 594 nursing homes in Belgium (De Gendt et al., 2013; Lingler et al., 2008). As would be expected larger sample sizes were more likely to be found in the quantitative studies. Most studies provided further descriptive data on their samples, e.g. gender (n = 22, 76%); age (n = 23, 79%); ethnicity (n = 12, 41%); education (n = 14, 48%);

professional role; relationship of carer to person with dementia (n = 11, 38%); level of cognitive function as indicated by tools (n = 12, 41%) (Mini Mental State Examination (MMSE); Cognitive Performance Scale (CPS), etc).

2.3.4 Diagnosis and assessment of cognitive impairment and dementia

In document Advance care planning in dementia: understanding the preferences of people with dementia and their carers (Page 64-80)