Conceptualising psychological distress in families in palliative care: Findings from a systematic review

575680 research-article2015

PMJ0010.1177/0269216315575680Palliative MedicineCarolan et al.

Review Article

Conceptualising psychological distress in families in palliative care: Findings from a systematic review

Palliative Medicine 1­–28 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216315575680 pmj.sagepub.com

Clare M Carolan1, Annetta Smith1 and Liz Forbat2

Abstract Background: Adult palliative care patients and their family members experience significant psychological distress and morbidity. Psychosocial interventions adopting a systemic approach may provide a cogent model to improve the psychosocial care of families in palliative care. To facilitate design of these interventions, the construct of psychological distress in families in palliative care should be empirically derived. Aim: To ascertain how psychological distress is conceptualised in families receiving palliative care. Design: A systematic review of the literature; this was followed by a thematic analysis and narrative synthesis. Data sources: Using pre-defined search terms, four electronic databases (MEDLINE, CINAHL, PsycINFO and Behavioural Sciences collections) were searched with no date restrictions imposed. Pre-determined inclusion and exclusion criteria were then applied. Results: A total of 32 papers were included in the review. Two findings emerged from data synthesis. First, distress is conceptualised as a multi-dimensional construct but little consensus exists as to how to capture and measure distress. Second, distress in the families within these studies can be conceptualised using a tiered approach, moving from individual non-interactive depictions of distress through gradations of interaction to convey a systemic account of distress within the family system. Thus, distress shifts from a unitary to a systemic construct. Conclusion: Currently, there is a paucity of research examining distress informed by family systems theories. This review proposes that distress in families in palliative care can be conceptualised and illustrated within a tiered model of distress. Further research is merited to advance current explanatory frameworks and theoretical models of distress.

Keywords Palliative care, family, review, systematic, distress

What is already known about the topic? •• The impact of cancer and life-threatening illness on the family system is recognised. •• Palliative care patients and their family members experience significant psychological distress. •• Little is known about how psychological distress in families receiving palliative care is currently conceptualised in the palliative care literature. What this paper adds? •• Distress is conceptualised as a multi-dimensional construct but little consensus exists as to how to capture and measure distress.

1School

of Health Sciences, University of Stirling (Western Isles Campus), Stornoway, UK 2School of Health Sciences, University of Stirling (Stirling Campus), Stirling, UK

Corresponding author: Clare M Carolan, School of Health Sciences, University of Stirling (Western Isles Campus), Western Isles Hospital, MacAulay Road, Stornoway, Isle of Lewis, HS1 2AF, UK. Email: [email protected]

Downloaded from pmj.sagepub.com at University of Stirling on May 21, 2015

2

Palliative Medicine •• Distress can be conceptualised using a tiered approach, moving from individual non-interactive depictions of distress through gradations of interaction to convey a systemic account of distress within the family system.Thus, distress shifts from a unitary to a systemic construct and can be conceptualised within a tiered model of distress.

Implications for practice, theory or policy •• Further research is needed to consensually determine the multi-dimensional construct of distress and to advance current explanatory frameworks and theoretical models of distress, research adopting a family systems approach is merited. •• The proposed tiered model of distress may assist researchers in the design of future research studies while clinicians may find the model helpful in understanding the complexities and interactions between different family members’ distress within the family system. •• While the tiered model and emergent evidence depicting distress within an interdependent relational system may help inform clinicians’ practice of distress assessment and management, this may have policy implications for healthcare systems which currently preference individual patient experience.

Background Adult palliative care patients experience significant psychological distress.1–3 While there has been promulgation of the term psychological distress in recent years, Mitchell4 argues that within the cancer literature psychological distress remains poorly operationalised and is conceptualised as a patient-reported symptom rather than a disease category. The National Comprehensive Cancer Network (NCCN)5 defines psychological distress as A multifactorial unpleasant emotional experience of a psychological (cognitive, behavioural, emotional), social and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms and its treatments. Distress extends along a continuum, ranging from common normal feelings of vulnerability, sadness, and fears to problems that can become disabling, such as depression, anxiety, panic, social isolation, and existential and spiritual crisis

Arguably while this definition primarily considers distress as a patient-reported symptom, it identifies functional impairment within its definitional parameters. The NCCN’s definition would indicate that distress is conceptualised not only from the patient’s subjective perspective as a reported symptom but also as objective diagnostic disease categories6,7 discernible to clinicians. Yet Wasteson et al.’s8 recent systematic review of the classification of depression in palliative cancer patients highlights that psychological distress and depression are rarely conceptualised in studies with few explicitly referencing a diagnostic system, with a wide range of assessment tools used and with little justification to the choice of assessment tool provided. Significant rates of psychological distress and morbidity have been demonstrated in family members and informal caregivers of palliative patients.9–11 The impact of cancer

and life-threatening illness as a ripple effect on the health and well-being of family members is well described within the cancer and palliative care literature and explicated through family systems theories.12–15 Furthermore, it is tacit within the World Health Organization’s16 definition that palliative care encompasses care to patients and their families. Psychosocial interventions adopting a family systems approach could thus provide a cogent model to ameliorate psychological distress in palliative care patients and their family members. Several definitions of family exist from the stereotypical nuclear conjugal family17 to those which acknowledge the primacy of individuals to selfdefine family.18,19 Studies of families can be considered as either family-related research or family research.20 Family-related research examines the perspective of individual family members,21 whereas family research seeks to examine the family unit22 by gathering data from multiple family informants or whole families.20 Such family research adopts a systemic approach informed from family systems theories23 to permit holistic examination of the family and iterative interaction between family subsystems. While there is a small but growing number of intervention studies examining distress in patients and their family members in the general cancer24–27 and advanced cancer literature,28 very few studies are underpinned by a theoretical perspective congruent with a systemic approach. Baik and Adams24 categorised theoretical perspectives in 16 studies of psychosocial interventions in couples facing cancer. They revealed the following: six studies had either no theoretical basis or an implied theoretical basis; five studies were based on theories emphasising an individual-level psychological adaptation and only three studies were based on theories with a dyadic or relational

Downloaded from pmj.sagepub.com at University of Stirling on May 21, 2015

3

Carolan et al. process focus. Similarly, in Badr and Krebs’26 systematic review and meta-analysis of couples coping with cancer, only four studies were informed by theories emphasising dyadic processes. Similarly, in McLean and Jones’28 review of intervention in couples with advanced cancer, two of the five studies reported no theoretical basis or an implied theoretical basis;29,30 one study was based on theories emphasising an individual-level psychological adaptation31 and two studies were based on theories with a dyadic or relational process focus.32,33 Ensuring the application of conceptual and theoretical frameworks informed from empirical evidence is considered a critical component to complex intervention design.34,35 Developing evidence-based complex interventions to address psychological distress will necessitate a review of the current evidence to ensure that salient constructs in study design are empirically derived. In developing complex interventions for psychological distress in families, one such construct to be derived is how psychological distress is conceptualised in families in palliative care. Previous reviews of family research examining distress have predominately focused on all cancer populations24–27,36,37 and most have been constrained by application of imposed limitations: studies of couples only37 and intervention studies in couples only.24–27 Similarly, McLean and Jones28 review in the advanced cancer population was limited to couples. Within the palliative care literature, reviews of distress in families have principally examined family-related research of the experience of family caregivers38–40 rather than family research per se. In contrast, this review sought to examine family research in palliative care to permit examination of how distress is conceptualised in families. This review sought to capture a wide perspective of distress in families of adult palliative care patients including those with a non-cancer diagnosis and with no imposed limitation of study design.

Aim The aim of this review is to ascertain how psychological distress is conceptualised in families of adult patients receiving palliative care.

Design A systematic search of the research literature was undertaken to identify studies examining psychological distress in palliative care. The following steps were conducted: literature search; primary screening of titles and abstracts; identification of full-text papers; critical appraisal of papers; data extraction from retrieved full-text papers and data synthesis.

Literature search Electronic databases (MEDLINE, CINAHL, PsycINFO and Behavioural Sciences collections) were searched with no date restriction imposed. The search was initially conducted in July 2013 and updated in November 2014. Search terms chosen were purposefully broad. The following search terms were used in electronic searches: Distress AND non-malignant/pulmonary disease, chronic obstructive/COPD/end stage respiratory/heart failure/liver failure/ kidney failure, chronic/renal insufficiency, chronic/end stage renal/motor neuron* disease/neurodegenerative disease*/end of life/terminal illness/terminally ill/terminal care/neoplasm/neoplasms, second/hematologic neoplasm/ advanced cancer/advanced tumor/advanced tumour/ advanced malig*/metastatic cancer/metastatic disease/palliative/palliative care/hospice*.

Inclusion and exclusion criteria Given the lack of consensus on the definition of a palliative care patient,41,42 the review used the definition adopted by Hudson et al.38 ‘as people with life-threatening, advanced, incurable disease’ (p. 10). Determining suitable definitional inclusion criteria of family to apply with this review to meaningfully capture psychological distress within families required careful consideration. In addition to established definitions of family,17–19 the research literature within palliative care also frequently employs terms such as family caregiver or primary caregiver. Similarly, the term caregiver has been attributed to differing definitional characteristics which may encompass definition attributes such as hours delivering unpaid care, for example, ‘Provided an average of at least 4 hours of care each day’ (p. 91)43 or in terms of sharing illness experience ‘those individuals who share closely in your illness experience’ (p. 89).44 Since previous studies of caregivers in palliative care populations have revealed that primary caregivers were family members in 96% of cases,45 it was considered that studies which sampled ‘caregivers’ could pragmatically be considered synonymous to those which sampled ‘family members’. Therefore, for the purposes of this review, an individual was considered to be a family member if they were identified as one of the following: identified by the patient as family, a relative of the patient, a spouse, in a spousal relationship to the patient and an informal caregiver to the patient. A paper was included in this review if it was an original research paper published in a peer review journal which examined psychological distress or reported findings pertaining to psychological distress from within the family system, that is, the study sample sought to include the patient and a minimum of one family member. Inclusion and exclusion criteria are described in Box 1.

Downloaded from pmj.sagepub.com at University of Stirling on May 21, 2015

4

Palliative Medicine

Box 1.  Inclusion and exclusion criteria. Inclusion

Exclusion

Rationale

1.

English language

Non-English language

2. 3.

Any date Original full-text research article which examines or reports on psychological distress. Studies which examine or report on psychological distress in adult (>18 years) palliative care patients and/ or their family member. Palliative care patients are defined by those with ‘as people with lifethreatening, advanced, incurable disease’ (p. 10).35

No date restriction Non-research articles

No resources were available to translate papers. To include as many papers as possible. To review the research literature to identify suitable papers for inclusion.

4.  

5.    

Studies which include patients with a range of prognoses, for example, cancer studies which include patients across a range of cancer stages. Studies which exclusively assessed patients with dementia.

The experience of distress may differ across different cancer stages, that is, the experience of distress in patients with potentially curable cancer may differ to palliative care cancer patients. Differences in how distress will be expressed and communicated in dementia patients and within families would limit synthesis of findings. Examine and report on psychological Measuring patient distress using To provide a contemporaneous distress from within the family system, proxies as standard measure. account of distress from patients and that is, sample aimed to include the Studies including others out-with the family members’ own experience of palliative care patient and a minimum of family system, for example, healthcare distress. one family member.   professionals.   Studies which included family outcomes during the bereavement period.

Screening of papers An initial search conducted in July 2013 and updated in November 2014 revealed 6177 titles and abstracts. After removing duplicates, 5174 titles and abstracts were screened using inclusion and exclusion criteria 1–4. This identified 1018 possible papers. Inclusion and exclusion criteria 1–4 were applied to these 1018 full-text papers which identified 523 papers reporting on psychological distress in adult palliative care patients and/or their family member. Inclusion criteria 5 was applied to these 523 papers and yielded 38 papers.

Quality appraisal The 38 papers were critically appraised using the appropriate Critical Appraisal Skills Programme checklist.46 Each checklist includes a series of questions about the validity, results and clinical relevance with questions varying depending on the type of study appraised, for example, cohort study and randomised control trial (RCT).46 All 38 papers were assessed by one reviewer (C.M.C.). One-third of these papers were selected for independent assessment shared between two peer reviewers (L.F. and A.S.).47 With consensual agreement, 32 papers were selected for inclusion in this review. The screening and quality appraisal processes are summarised in the Preferred Reporting Items for Systematic

Reviews and Meta-Analyses (PRISMA) flow diagram in Figure 1.

Data extraction The full-length papers were read and data extracted under the following headings according to the following subheadings: •• •• •• ••

Author, publication year, country of origin; Study design, sample, aims, informing theory; Measures used; Study findings and study limitations.

Data synthesis The papers included in this review were heterogeneous and a narrative synthesis approach was adopted.82 A preliminary synthesis was conducted by the first reviewer (C.M.C.) with textual description and tabulation of the studies using the above data extraction headings and a thematic analysis applied. Tabulation of the studies enabled the first author (C.M.C.) to compare and contrast study design and findings; the relationships between studies were explored using concept mapping. The focus of the analysis was to ascertain how distress was conceptualised. An assessment of the robustness of the analysis was undertaken by two authors (A.S. and L.F.) who compared the

Downloaded from pmj.sagepub.com at University of Stirling on May 21, 2015

5

Carolan et al.

Addional records idenfied through other sources (n=0) not undertaken

Records idenfied through database searching (n=6,177)

Records aer duplicates removed (n=5,174)

Titles & abstracts screened Applying criteria 1-4 (n=5,174)

Full-text arcles screened Applying criteria 1-4 (n=1,018)

Full-text arcles screened Applying criteria 5 (n=523)

Full-text arcles excluded (n=6) [48-53]

Full-text arcles quality appraised (n=38)

Records excluded (n=4,156)

Full-text arcles excluded (n=495) 450-Not palliave 40-Not distress 1-Paediatric paent 4-Clinical case reports

Full-text arcles excluded (n=485) 347-Paent only sample 75-Family member only sample 46- Sample included others and/or using proxy measures 14-Sample included paent and family member but only examined distress in paent or family member only 3-Sample included paent and family member but included outcomes in bereavement

Full-text arcles Included (n=32) [10, 11, 30, 43, 54-81]

Figure 1.  PRISMA flow diagram.

proposed narrative synthesis and the proposed tiered model of distress against the primary data.

Results The 32 papers were published between 1993 and 2014. Quantitative studies predominated with 29 quantitative10,11,30,43,54–78 and 3 qualitative studies included79–81 in the review. Of the quantitative studies, 17 were cross-sectional; 5 employed a longitudinal cohort design and 7 were interventional studies of various designs. One qualitative study employed a longitudinal design. A total of 24 studies were conducted in North America with the 8 remaining

studies conducted in the United Kingdom (2), Australia (2), Israel (2), Germany (1) and Taiwan (1). The majority of studies examined those with a cancer only diagnosis with only three studies of a mixed palliative care population and only one study of non-malignant palliative care (heart failure). The cancer studies were subdivided as follows: 15 were of mixed cancer types, 11 were of single cancer types (7 breast, 3 lung and 1 glioblastoma) and 2 unspecified. Only 14 studies had an underpinning theoretical basis. Five studies were informed from Stress, Appraisal and Coping Theories60,62,68,74,75 and four were informed from Attachment Theories.63,64,70,72 The remaining five studies used the following: Family-Focused Grief Therapy model,11

Downloaded from pmj.sagepub.com at University of Stirling on May 21, 2015

6

Palliative Medicine

an adapted model for a peaceful death,43 Cancer-family caregiving model,58 diathesis–stress framework55 and a newly proposed heuristic model.57 The underpinning theoretical basis in 10 of these 14 studies permitted examination of relational functioning or intra-personal processes such a dyadic coping congruent with systemic approach.11,55,57,62–64,68,70,72,75 Table 1 presents a summary of the design, sample, aims and informing theory of the included studies. Table 2 presents a summary of the findings and limitation of the studies. The following findings emerged from data synthesis: 1. Dimensions of distress. 2. A tiered model of distress.

Dimensions of distress Of the 26 papers, 13 make explicit use of the term distress within the studies’ stated aims. The use of the term distress varies and includes distress,30,57,62 symptom distress,61 emotional distress,65 psychological distress,54,56,67,72,79 psychosocial distress64,70 and cancer-related distress.68 In their study, Murray et al.79 also employ the terms social and spiritual distress. The remaining studies use a variety of different terms to convey distress, for example, psychological morbidity.10,11 No papers offer clear definitional parameters. Lee et al.58 exemplifies psychological distress as anxiety and depression (p. 2617), while Murray et al.’s79 qualitative study notes in its introduction the following: Although quality of life is a multidimensional construct, psychological distress is the best researched aspect of quality of life in carers. (pp. 1–2)

Across the 29 quantitative studies, 35 differing measures were used; 17 studies used identical measures in the patient and family member,10,11,30,54,55,58,63,64,67,68,70,72–74,76–78 while 4 studies used comparable distress measures.60,62,66,75 Two studies used the uni-dimensional distress thermometer (DT),61,65 one study used the structured clinical interview for Diagnostic and Statistical Manual of Mental Disorders (DSM-IV),73 while the remaining studies used a variety of multi-dimensional tools which spanned general symptom reporting measures, psychometric screening/ assessment measures and quality-of-life measures. Using these categories, a matrix of measures was derived and is presented in Table 3. The matrix suggests that distress is conceptualised as a multi-dimensional construct as evidenced by the wide spectrum of measures employed in these studies. Yet this diversity of measures used and the lack of definitional parameters indicated earlier would suggest there is little consensus as to the attributes of these dimensions of distress and the most suitable measure(s) to capture this. One study highlighted that the different measurement tools

used in the study appeared to capture different attributes of distress: a higher number of patients endorsed the presence of emotional distress on the DT (Distress Thermometer) compared with lower rates of ESAS (Edmonton Symptom Assessment Scale) depression, suggesting these measure different attributes from the patients ‘perspective’. (p. 70)65

All three qualitative studies report distress within their findings but vary in how this is portrayed. Murray et al.79 describe distress as a multi-dimensional experience encompassing physical, social, psychological and spiritual domains which impacts on well-being and fluctuates spatially in time across the disease trajectory. Participants in this study describe cognitive, affective and behavioural phenomena which are interpreted as distress by the research team. However, clarity in interpretation of distress is variable. For example, descriptions which appear to convey disbelief during diagnosis were interpreted as ‘acute anxiety’ (p. 6),79 whereas the description of a ‘bit depressed’ (p. 3)79 by a participant caregiver is not further clarified nor explored. Cohen et al.’s80 phenomenological study reports on the distressing experience of delirium. The distress associated with the experience of delirium is described by patients and their relatives as an affective phenomenon. The study also revealed that caregivers’ cognition of the perceived significance of the meaning of delirium as a pre-terminal event was a source of distress. Zhang and Siminoff’s81 qualitative study reports on psychological distress in relation to communication practices in families in advanced cancer. The study describes the complex interplay between psychological distress and communication practices with distress viewed as an antecedent inhibitor to communication and as a postcedent product of communication practices and encompassed cognitive, affective and behavioural domains. Communication practices could either be active communication or conversely, failure to communicate. The study’s findings also point to the distinction between the processes of communicating about distress and communicating distress within families.

A tiered model of distress Distress in the families within the 32 studies can be conceptualised using a tiered approach, illustrated in Figure 2. This model illustrates how distress is conceptualised moving from unitary non-interactive depictions of distress in patients and family members, through gradations of interaction, to convey an iterative systemic account of distress within the family system. Thus, the construct of distress shifts from a unitary to a systemic construct. Distress as a unitary construct – no interaction.  Four studies examined distress from the individual perspective of the

Downloaded from pmj.sagepub.com at University of Stirling on May 21, 2015

Metastatic breast cancer

Advanced lung cancer

Advanced cancer (lung, pancreas, colorectal, or ovarian)

Longitudinal cohort study of patient–spousal/partner dyads. Data points at baseline, 3 and 6 months. 191 dyads at baseline. 110 dyads completed all three data points. Cross-sectional study of 106 patient–family caregiver dyads.

Cross-sectional study of 278 patient–spousal dyads.

Cross-sectional study of 106 patient–family caregiver dyads.

Prospective longitudinal cohort study of 226 patient– primary caregiver dyads.

Badr and Shen;55 2014; USA

Lo et al.;57 2013; Canada

Lee et al.;58 2013; Taiwan

Douglas and Daly;59 2013; USA

Götze et al.;56 2014; Germany

Advanced breast cancer

Cross-sectional study of 150 patient–spousal dyads.

Advanced cancer (lung, gastrointestinal breast, gynaecological, genitourinary)

Palliative cancer disease being cared for at home (mixed cancer group)

Patient

Hasson-Ohayon et al.;54 2014; Israel

Sample characteristics

Design

Author; year of publication; country of origin 

Table 1.  Design, sample, aims and informing theory.

Downloaded from pmj.sagepub.com at University of Stirling on May 21, 2015

Primary caregiver (69% spouse; 19% child; 12% other)

Family caregiver (42.4% spouse; 38.7% adult children including in-laws; 18.9% other relatives)

Spouse caregiver

Primary caregiver (75% ‘life partners’; 16% adult children; 9% sibling or grandchildren)

Male partner (spouse or significant other) with whom they had lived for at least 1 year

Spouse

Family member

To explore the prevalence and severity of anxiety and depression in family caregiver and to identify factors related to family caregivers’ anxiety and depression. To examine the relationship between patient physical QOL and caregiver depression, and to evaluate the mediating role of patient spiritual well-being.

To examine the level of psychological distress of palliative patients and their family caregivers and to investigate the impact of sociodemographic and care-related factors on distress. To test a newly derived heuristic model of distress.

To compare the relationship between social support, hope and depression across different age groups of women and their spouses. To examine the associations between the quality of the spousal relationship catastrophising and depression.

Aims of the study

(Continued)

No underpinning theoretical model.

Newly derived heuristic model informed from the literature.85 This model depicts patients and caregivers as an interdependent relational with social relatedness as protective factor for distress. Cancer-family caregiving model.86

No underpinning theoretical model.

Diathesis-stress framework.83,84

No underpinning theoretical model. Exploratory study informed from literature review.

 

Informing theory

Carolan et al. 7

Two-group mixed-methods comparative experimental design. 40 patient–caregiver dyads. The control subjects (21/40) received usual care only, and the treatment group (19/40) received usual care plus the COPE intervention. Repeated measures at baseline weeks 4 and 5 Cross-sectional study of 81 patients and 30 caregivers.

RCT of patient–caregiver dyads. Data points at baseline, 3 and 6 months. 484 dyads at baseline. Complete data for 302 dyads.

RCT of 42 couple dyads. Data points at baseline, postintervention and 3 months post-intervention.

McMillan et al.;60 2013; USA

Northouse et al.;62 2013; USA

McLean et al.;63 2013; Canada

Rhondali et al.;61 2013; USA

Design

Author; year of publication; country of origin 

Table 1. (Continued)

Downloaded from pmj.sagepub.com at University of Stirling on May 21, 2015

Metastatic cancer (mixed cancer group)

Advanced cancer (breast, colorectal, lung or prostate) Life expectancy > 6 months

Advanced cancer (mixed cancer group)

Heart failure receiving hospice care

Patient

Sample characteristics

In a romantic relationship >1 year with the patient

Caregiver (74% spouses)

Caregiver (80% were the patient’s spouse)

Family caregiver who provided at least 4 h of care per day (42.5% spouses; 40% adult children)

Family member

To examine associations between body mass index (BMI), weight loss, symptom distress, and body image for patients with advanced cancer and their caregivers. To examine the outcomes in patient–caregiver dyads of a brief or extensive dyadic intervention (the FOCUS Programme) compared to usual care and whether patients’ risk of distress and other factors moderated the effect of the brief or extensive programme on outcomes. The FOCUS programme provided education and support to cancer patients and caregivers together, as the unit of care. To evaluate the effect of Emotionally Focused Therapy intervention modified for the advanced cancer population versus standard care on marital functioning and psychosocial outcomes in distressed couples.

To pilot test the HF-COPE intervention for caregivers of HF patients in hospice care assess outcomes in caregiver burden, quality of life, depression and anxiety, caregiver knowledge, patient quality of life, and emergency room visits and hospitalisations.

Aims of the study

Emotionally Focused Therapy. Informed from attachment theory and interpersonal processes.88–90

Study-derived model informed from stress – coping theory.87

No underpinning theoretical model. Hypothesis testing derived from literature review.

Transactional stress process model.87

 

Informing theory

8 Palliative Medicine

Downloaded from pmj.sagepub.com at University of Stirling on May 21, 2015

One-arm intervention study of patient–main caregiver dyads. Data points at baseline fortnightly till study end at 1 year or death. Data presented in this study for baseline and Day 14. 95 dyads at baseline 88 dyads at Day 14 34 dyads at study completion Longitudinal RCT of patient– caregiver dyads. Data point at baseline and 3 weeks. 709 dyads at baseline 350 dyads at 3 weeks.

Howell et al.;65 2011; Canada

Palos et al.;66 2011; USA

Longitudinal cohort study of patient–caregiver dyads of patients starting chemotherapy. Three data points over 20 weeks: baseline (pretreatment), during treatment and after treatment. 107 dyads at baseline. 85 dyads completed all three data points.

Cross-sectional study of 46 couple dyads.

McLean et al.;64 2011; Canada

McMillan et al.;43 2011; USA

Design

Author; year of publication; country of origin 

Table 1. (Continued)

Caregivers. Caregiver defined as those who intend to assist, without pay, the patient for at least 4 h per week.

Family caregiver Caregiver defined as: those providing >4 h day care

Newly admitted to hospice home care.

Advanced solid cancer patients categorised as underserved.

Caregiver (62% spousal caregivers)

Spouse caregiver

Family member

Advanced life-threatening disease (non-malignant diagnosis in 12.6% with the remainder cancer diagnoses)

End-stage cancer (mixed cancer group)

Patient

Sample characteristics

To determine the efficacy of systematic feedback from standardised assessment tools for hospice patient–caregiver dyads in improving hospice outcomes compared with the usual clinical practice. To determine the prevalence and severity of symptom burden reported over time by patient– caregiver dyads.

To determine levels of depression and hopelessness and to explore the relationship between attachment security and psychosocial distress in patients with and spouse caregivers, experiencing marital distress To examine the impact of a shared care pilot programme on patient symptoms severity and emotional distress in patient and family and the concordance between patients preferred and actual place of death.

Aims of the study

(Continued)

No underpinning theoretical model. Study hypothesis was that greater distress and sadness would be reported by caregivers than by patients.

Revised model of Emanuel and Emanuel’s93 model for a peaceful death.

No underpinning theoretical model.

Attachment theory.91,92

 

Informing theory

Carolan et al. 9

Downloaded from pmj.sagepub.com at University of Stirling on May 21, 2015

Lung cancer patients receiving palliative treatment

Metastatic breast cancer

Secondary data analysis of serial qualitative interviews with 19 patient–caregiver dyads. Data gathered every 3 months for up to a year or to bereavement.

Longitudinal cohort study of patient–spousal/partner dyads. Data points at baseline, 3 and 6 months. 191 dyads at baseline. 110 dyads completed all three data points. Qualitative phenomenology study of patients (n = 34) and their family caregivers (n = 37). Cross-sectional study 70 patient–caregiver dyads.

Murray et al.;79 2010; UK

Badr et al.;68 2010; USA

Keir et al.;69 2009; USA

Cohen et al.;80 2009; USA

Advanced breast cancer

Cross-sectional study of 150 patient–spousal dyads.

Advanced cancer in specialist inpatient palliative care unit (mixed cancer groups) High-grade glioblastoma

Patient

Hasson-Ohayon et al.;67 2010; Israel

Sample characteristics

Design

Author; year of publication; country of origin 

Table 1. (Continued)

Primary caregiver (60 spousal/partners)

Family caregiver (21 spouses; 5 siblings; 9 children; 2 parents)

Male partner (spouse or significant other) with whom they had lived for at least 1 year.

Family caregivers (17 spouses; 2 daughters)

Spouse

Family member

To ascertain whether family caregivers of patients with lung cancer experience the patterns of social, psychological and spiritual well-being and distress typical of the patient, from diagnosis to death and to understand these issues from the perspectives of carers and patients. To prospectively evaluate whether common dyadic coping was associated with less cancer-related distress and greater dyadic adjustment for female metastatic breast cancer patients and their male partners. To better understand deliriumrelated distress in advanced cancer patients and their caregivers. To provide a better understanding of caregiving appraisal and the interplay between patient quality of life and perceived stress.

To examine the effect of perceived support from different agents on psychological distress.

Aims of the study

No underpinning theoretical model.

No underpinning theoretical model.

Systemic–Transactional Model of dyadic coping.97,98

The study used an adapted Actor–Partner Interdependence Model94–96 to interpret the findings but no underpinning theoretical model was used. No underpinning theoretical model.

 

Informing theory

10 Palliative Medicine

Advanced cancer (cancer types not described)

Advanced breast cancer

Cross-sectional study of 101 couple dyads.

Cross-sectional study of 168 non-genetically related patient–caregiver dyads.

Cross-sectional study of 189 female patient–caregiver dyads.

Braun et al.;72 2007; USA

Bambauer et al.;73 2006; USA

Kershaw et al.;74 2004; USA

McPherson et al.;71 2008; Canada

One-arm pre- and postintervention prospective design of couple dyads receiving couple therapy. Couples were provided eight weekly sessions of Emotionally Focused Couple Therapy. Data points at baseline, after four and eight sessions and 3 months post-intervention. 16 couples at baseline. Complete data for 15 couples. Cross-sectional study of 66 patient–caregiver dyads.

Advanced cancer Stage III and IV lung cancer (25.7%) Stage IV GI cancer (74.3%)

Advanced cancer receiving palliative care (mixed cancer groups)

Advanced cancer (mixed cancer groups)

Patient

McLean et al.;70 2008; Canada

Sample characteristics

Design

Author; year of publication; country of origin 

Table 1. (Continued)

Downloaded from pmj.sagepub.com at University of Stirling on May 21, 2015

Family caregiver (spouses 59%; sisters 8%; adult children 19%; other relatives or friends 14%)

Primary, informal (nonpaid) non-genetically related caregivers

Spouse caregiver

Family caregiver (primary person providing informal care)

Spouse caregiver/ significant partner identified by the patient

Family member

To examine the concordance between patients’ and family caregivers’ assessments of patients’ symptoms, and to identify demographic and psychosocial factors that affect levels of agreement. To assess psychological distress in advanced cancer patients and their spouse caregivers and to examine the contribution of subjective caregiving burden and relational functioning to spousal depressive symptoms. To test for mutuality and specificity in rates of mental disorders in advanced cancer patients and their informal caregivers. To compare coping strategies used by patients with advanced breast cancer and their family caregivers and their quality of life.

To evaluate the effectiveness of a couples intervention in improving marital functioning and to determine its impact on other symptoms of psychosocial distress and its feasibility and acceptability as a clinical intervention.

Aims of the study

(Continued)

Hypothesis testing derived from literature review of stress and coping including Lazarus.101

No underpinning theoretical model.

Attachment theory.91,99,100

No underpinning theoretical model.

Emotionally Focused Therapy Informed from attachment theory and interpersonal processes.89

 

Informing theory

Carolan et al. 11

Qualitative study of 37 patients and 40 caregivers. Patient, primary and secondary caregiver triads from 14 families. Patient–caregiver dyads from 12 families. Cross-sectional study of 81 families. 81 patients and 282 family members (>12 years).

Pilot uncontrolled intervention study of six couple dyads receiving an 8-week couple intervention. Data points at baseline and post-intervention. Cross-sectional study of 189 patient–caregiver dyads.

Zhang and Siminoff;81 2003; USA

Mohr et al.;30 2003; USA

Caregiver (Spouse 59%; Daughter 14%; Son 5%; Sister 8%; other relative or friend 14%)

Recurrent breast cancer (11.5% Stage 3; 83.5% stage 4) Prognosis of >6 months

Downloaded from pmj.sagepub.com at University of Stirling on May 21, 2015

Palliative care patients with cancer diagnosis and estimated prognosis