Moira O’Connor

Do models of care designed for terminally ill ‘home alone’ people improve their end‐of‐life experience? A patient perspective

Palliative care patients who live alone report greater psychological distress, and are less likely to die at home than those living with a family carer. However, there is a lack of research on the value of models of care that specifically address this disadvantage. This article describes the experiences of terminally ill ‘home alone’ people using one of two models of care aimed at maintaining participants’ need for independent living, focusing on the effect of these two models of care on their physical, social and emotional needs. Twenty six palliative care patients of Silver Chain Hospice Care, in Western Australia, were randomly assigned to either having a personal alarm or additional care-aide hours in their home. An in-depth qualitative study was conducted in two phases in 2010 using face-to-face interviews. The care-aide model of care resulted in benefits such as easing the burden of everyday living; supporting well-being; enhancing quality of life and preserving a sense of dignity; and reducing loneliness and isolation. The personal alarm model of care imparted a sense of security; provided peace of mind; and helped to deal with feelings of isolation. Participants in both groups felt that they could remain at home longer. By providing a safer, more secure environment through the use of a personal alarm or additional care-aide hours, patients were able to continue their activities of daily living, could build a sense of ‘normality’ into their lives, and they could live independently through support and dignity.

Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease

BackgroundDignity therapy is a brief psychotherapy that has been shown to enhance the end of life experience. Dignity therapy often involves family carers to support patients weakened by illness and family carers are also the usual recipients of the legacy documents created. No research to date has examined the impact of dignity therapy on family carers at the time of the intervention. This study examined the effects of dignity therapy on family carers of people with motor neurone disease (MND).MethodsThis is a cross-sectional study utilizing a one-group pre-test post-test design with 18 family carers of people diagnosed with MND. Outcomes measured caregiver burden, anxiety, depression, and hopefulness. Acceptability was measured with a questionnaire. Feasibility was assessed by examining family carers’ involvement in the therapy sessions, time taken to conduct sessions, and any special accommodations or deviations from the dignity therapy protocol.ResultsThere were no significant pre-test post-test changes on the group level, but there were decreases in anxiety and depression on the individual level. Baseline measures indicate that 50% of family carers had moderate to severe scores for anxiety prior to dignity therapy. MND family carers saw benefits to the person with MND and to themselves after bereavement, but acceptability of dignity therapy at the time of the intervention was mixed with some family carers indicating it was helpful, some indicating it was harmful, and many expressing ambivalence. Dignity therapy involving MND family carers is feasible and the involvement of family carers has minimal impact on the therapy.ConclusionDignity therapy is not likely to alleviate caregiver burden in MND family carers, but it may have the ability to decrease or moderate anxiety and depression in distressed MND family carers. Dignity therapy is feasible and generally acceptable to MND family carers. Dignity therapists may provide a better experience for family carers when they are aware of acceptance levels and the quality of partner relationships.Trial registrationANZCTR Trial Number: ACTRN12611000410954

Is dignity therapy feasible to enhance the end of life experience for people with motor neurone disease and their family carers

BackgroundDevelopment of interventions that address psychosocial and existential distress in people with motor neurone disease (MND) or that alleviate caregiver burden in MND family carers have often been suggested in the research literature. Dignity therapy, which was developed to reduce psychosocial and existential distress at the end of life, has been shown to benefit people dying of cancer and their families. These results may not be transferable to people with MND. The objectives of this study are to assess the feasibility, acceptability and potential effectiveness of dignity therapy to enhance the end of life experience for people with motor neurone disease and their family carers.Methods/designThis is a cross-sectional study utilizing a single treatment group and a pre/post test design. The study population will comprise fifty people diagnosed with MND and their nominated family carers. Primarily quantitative outcomes will be gathered through measures assessed at baseline and at approximately one week after the intervention. Outcomes for participants include hopefulness, spirituality and dignity. Outcomes for family carers include perceived caregiver burden, hopefulness and anxiety/depression. Feedback and satisfaction with the intervention will be gathered through a questionnaire.DiscussionThis detailed research will explore if dignity therapy has the potential to enhance the end of life experience for people with MND and their family carers, and fill a gap for professionals who are called on to address the spiritual, existential and psychosocial needs of their MND patients and families.Trial registrationACTRN Trial Number: ACTRN12611000410954

The effect of caregiving on bereavement outcome: study protocol for a longitudinal, prospective study

BackgroundThe aim of the current study is to determine the effects of caregiving on bereavement outcome. The study will address two important gaps in the research literature: (1) the relationship between pre-death distress and post-death outcomes and (2) family caregivers’ anticipation and preparation of the death of the person for whom they care.Methods/DesignWe will conduct a longitudinal, prospective study of adult family caregivers of adult patients receiving palliative care. All participants will complete a questionnaire administered at four points – approximately 4–8 weeks prior to bereavement, and 3–4, 6–7, and 9–10 months post-bereavement. The questionnaire includes measures of multidimensional caregiving experiences (strain, distress, positive appraisals, and family wellbeing), caregiver prolonged grief, multidimensional grief responses (despair, panic behaviour, blame and anger, detachment, disorganisation, and personal growth), prolonged grief, quality of life, general health (psychological and physical) and demographics. These caregivers’ data will be compared to a comparison group matched for age, sex, and postcode, allowing the caregivers’ general health and quality of life to be compared to a normative group. The caregivers will also be invited to participate in a semi-structured interview about preparing for impending bereavement.DiscussionThis is the first study to address the methodological limitations in the current literature and will likely make a significant contribution to both our understanding of caregiving on bereavement outcome and to bereavement care offered in palliative and hospice settings.

Heightened perception of breast cancer risk in young women at risk of familial breast cancer

The objective of this study was to explore the factors that influence perceived personal risk of developing breast cancer (BC) in younger women (<35) who are considering or have undergone bilateral prophylactic mastectomy (BPM). Qualitative interviews guided by interpretative phenomenological analysis were conducted with 46 women who had a strong family history of BC and had either undergone (n = 26) or were considering (n = 20) BPM. Participants were recruited from Australia and New Zealand via hospitals, a genetics clinic, a research cohort, a registry and online. Three main themes were identified: information that increases fear of BC and death, underlying anxiety and fear and screening anxiety. A further two themes: relief following surgery and confusion about residual risk following surgery were identified. Younger women (<35) appeared to have heightened and sometimes inaccurate perceptions of their BC risk. They appeared less relieved of anxiety and fear of developing BC by BPM surgery, in comparison to previous research with older women (>40). Those who had undergone BPM seemed more anxious about their risk of developing BC than those who were still considering surgery. This research has important implications for practice, particularly improving communication of accurate risk statistics. Future research should examine why some women interpret information differently and explore the benefits of psychological consultation for very anxious women.

Detecting Distress: Introducing Routine Screening in a Gynecologic Cancer Setting

BACKGROUND: Cancer results in a wide range of challenges that contribute to patient distress. Detecting distress in patients can result in improved patient outcomes, and early intervention can avoid patients having unmet needs. OBJECTIVES: The aims were to determine the prevalence of distress in patients with gynecologic cancers, identify specific problems, and explore staff perceptions of distress screening. METHODS: A mixed‐methods design was used. Quantitative data were collected on distress levels and problems. Qualitative interviews were conducted with healthcare professionals. FINDINGS: Sixty‐six percent of women scored 4 or greater on the Distress Thermometer, which was used as the indicator for follow‐up or referral. A third reported low distress, and the same proportion was highly distressed. The top five problems identified by participants were nervousness, worry, fears, fatigue, and sleep problems.

Influences on decision-making for young women undergoing bilateral prophylactic mastectomy

OBJECTIVE The objective of this study was to explore the influences on decision-making of younger women (<35) undergoing or considering bilateral prophylactic mastectomy (BPM). METHODS Qualitative interviews guided by interpretative phenomenological analysis (IPA) were conducted with forty-six women who had a strong family history of breast cancer (BC) who had either undergone (n=26) or were considering (n=20) BPM. Participants were recruited from Australia and New Zealand (NZ) via hospitals, a genetics clinic, a research cohort, a registry and online. RESULTS Four themes underpinning the influences on decision-making were identified: fear and anxiety, children, personal experiences with BC, health professionals influence. CONCLUSIONS The decision to undergo BPM for younger women (<35) was multifaceted, however, it appeared that fear and anxiety were the main influence. Younger women appear more anxious than previous research with older women. There appears to be few differences between those with confirmed BRCA1/2 mutations and those with no known mutation and this is clinically significant. PRACTICE IMPLICATIONS These findings have important practice implications, particularly improving communication of risk statistics, especially to those with no known mutation. Health professionals need to take into account the way younger women perceive information given to them when discussing risk.

From consultation to participation in public health research: reflections on a community-based research partnership

BackgroundRoad traffic crashes and their outcomes are substantial global public health issues and public health initiatives are increasingly involving relevant community members in order to create sustainable change. This paper describes an applied research project utilizing participatory methods to establish a road trauma support service in Western Australia and reflects on the extent of participation in the community-based research partnership. Community-based participatory research (CBPR) provided the basis for the research project conducted in partnership with 34 government and non-government agency representatives and people affected personally by road trauma and which resulted in 22 recommendations for establishing the service.FindingsAttempts to position the group as co-researchers highlighted the dynamic interplay of factors that hinder and enable participation in participatory research. Barriers to participation within the research process included the limited time and funds, reluctance to share authorship, and a lack of clarity regarding roles and processes. Factors that enabled participation were the recognition of each member’s expertise, providing different forms and methods of communication, and the reimbursement of costs according to role.DiscussionIn May 2012, the Government of Western Australia announced it would fund the recommendations and Road Trauma Support Western Australia was launched in November 2013. Notwithstanding this successful outcome, there were varied experiences of participation in the research process, and this was despite the use of a research methodology that is by definition participatory, with explicit and embedded participatory structures and processes. The research project shows that elements of CBPR can be incorporated into public health research, even in projects with externally-imposed time and budget constraints.

The health professionals’ perspectives of support needs of adult head and neck cancer survivors and their families: a Delphi study

PurposeThe aim was to identify the views of Australian and New Zealand health professionals regarding the support needs of people with head and neck cancer (HNC) and their families and current gaps in service delivery.MethodsA modified Delphi process assessed support needs of people with HNC following acute medical management. A systematic review of the literature was used to develop items relevant to seven key concepts underpinning the psychological experience of living with HNC. A panel of 105 health professionals was invited to participate in two questionnaire rounds.ResultsOf the potential panellists, 50 (48%) completed round 1, and of these, 39 (78%) completed round 2. Following two rounds, there was consensus agreement on the concepts uncertainty and waiting, disruption to daily life and fear of recurrence. The concepts the diminished self, making sense of and managing the experience, sharing the burden and finding a path did not achieve consensus. There were no differences in responses according to gender, organization type or location. Medical professionals had significantly higher agreement for the concept uncertainty and waiting compared to allied health professionals, and professionals with five years’ or more experience had significantly higher agreement than those with less experience.ConclusionsHealth professionals agreed that many psychosocial support needs of HNC survivors and families are not being met and that they experience difficulties in meeting these needs. Findings may inform evidence-based treatment programs for HNC survivors and their families to promote psychological resilience and quality of life in this vulnerable population.

Exploratory study of metacognitive beliefs about coping processes in prolonged grief symptomatology

ABSTRACT Despite research examining the role of metacognitive beliefs about coping processes in maintaining psychological disorders, to date, no studies have explored their role in the maintenance of prolonged grief. Twelve semistructured interviews were conducted with bereavement specialists and bereaved people with elevated grief to identify metacognitive beliefs about coping processes relevant to prolonged grief. Analysis revealed several metacognitive beliefs potentially driving maladaptive coping processes used by people with prolonged grief symptomatology. Findings may underpin the development of interventions that aim to modify unhelpful metacognitive beliefs that perpetuate maladaptive coping processes.