Experiences and Perceptions of Trained Volunteers in Dementia Palliative Care: Descriptive Qualitative Study

1. Abstract

The aim of this study is to understand the perceptions and experiences of trained volunteers in caring for patients in dementia-palliative ward in Singapore.

Methods

A descriptive qualitative research study will be conducted in Assisi Hospice (AH). Purposive sampling will be used to recruit 20 participants. The data will be collected through face-to-face semi-structured interviews and will be analysed using thematic analysis.

Significance of the study

This study will provide beneficial insights into reasons and factors influencing volunteers choosing to contribute in palliative care settings in Singapore. The information will be a good direction for strategic planning for recruiting and retaining trained volunteers in dementia palliative care.

Keywords

Dementia, Experiences, Palliative, Perceptions, Singapore, Volunteer

2. Introduction (300 words)

It was estimated that in dementia has affected 50 million people worldwide in 2018 and this number is expected to rise to 82 million in 2030 and 152 million in 2050 (Alzheimer’s Disease International 2017). In Singapore, this disease currently affects 82,000 people and the number is expected to exceed 100,000 in a few more years (WiSE study by the Institute of Mental Health, 2015).

Dementia is a progressive, incurable disorder that severely limits an individual’s functional ability and quality of life. Depending on the progression or stages of the condition, patients experience widespread impairment of mental function which may include memory loss, language impairment, disorientation, personality changes, difficulties with activities of daily living, neglect and psychiatric syndromes. Although it is a condition with increasing prevalence and complex needs, patients with dementia are less likely to have palliative care planning than those with terminal cancer, as people do not usually recognise dementia as a terminal illness that one can die from.

Due to the prevalence of dementia, the World Health Organization issued a statement on the importance of expanding palliative care services to include dementia (WHO, 2015). Palliative care not only improves the quality of life and death of patients suffering with dementia, but it also provides vital support for carers and family members. Due to the labour intensiveness of caring for people with dementia – both management of physical and behavioural symptoms of person with dementia (PWD) can be mentally taxing for the nurses to handle alone.

The inclusion of volunteers in palliative care has been found to be a positive contribution to not only the well-being of the patients but also to palliative healthcare professionals. An important volunteer task in palliative care is to provide emotional, social support, and companionship to the patient. In addition, volunteers can play an important role by alleviating the nurses’ workload by assisting in time-consuming basic care such as feeding or by supervising patients on fall precautions. However being a volunteer is known to include a lot of stress, thereby it is crucial that appropriate training is provided for volunteers to support dementia-palliative inpatient care services.

Since the availability of volunteering programme is one of the most valued facilitators in dementia-palliative care, there is a need to explore volunteers’ volunteering experience to identify areas of improvement in the programme. Hence, this allows the identification of barriers and motivators of volunteering work in dementia-palliative care, that may help with the development of a sustainable volunteering model.

3. Overview Of Literature (1500 words)

A comprehensive search of literature was conducted in online databases such as NUS Library, Cochrane Library, PubMed, Google Scholar and ScienceDirect. The key search terms used included dementia, experiences, palliative care, perceptions and volunteer. Both quantitative and qualitative evidence are used to search for journal articles in English that are published between 1999 and 2019. A secondary search was conducted by reviewing the reference lists of gathered articles. In general, the articles found were recent and were mainly from western countries, such as the United Kingdom, United States and Australia. There were limited information from a Singaporean perspective or a South East Asian perspective.

To meet the growing need for the availability of trained volunteers to enhance the PWD’s quality of care, there is a greater need to explore the effects of volunteerism in a clinical setting, especially dementia-palliative ward. There were several recurring themes within the literature with regards to effects of volunteerism in a palliative care setting. The four distinct themes include: the need for palliative care for dementia, challenges in providing person-centred care, role of volunteerism in dementia palliative care setting and challenges of volunteerism.

(i) Palliative care for dementia

In dementia, both the number and severity of symptoms increase throughout the course of the illness, making daily functioning and participation in social activities increasingly difficult. Due to the complexity in diagnosing the onset and severity of dementia, it is particularly challenging for doctors to determine with much precision how long a person with advanced dementia can expect to live. Prior to the setting up of this palliative care wards in Singapore, those with advanced dementia mostly live and die at home or in nursing homes. Although palliative care in dementia is increasingly being studied, high quality evidence is not yet available to show the importance of dementia care, especially in an ageing country like Singapore (van der Steen, 2010).

Early access of palliative care not only help address patients’ and families’ concerns and needs, it improves the quality of life and may even prolong the life of the patients (van der Steen et al, 2014; Temel et al, 2010).

(ii) Challenges in providing person-centered care

The palliative care approach provides appropriate control of symptoms, emphasizes overall quality of life and takes a holistic approach. It should also involves the patient and family in decisions and foster good supportive communication between patients, carers and non-carers. Such approach is classified as person centred care. As providing care for PWD is often exhausting and stressful for families and often at a late stage of the disorder, it would be beneficial if PWD get formal care support.

Several papers suggested that a palliative care approach in dementia is favoured by not only the patients, but also both formal and informal carers (Diwan et al, 2004; Hertogh CMPM, 2006; Nakanishi et al, 2017; Epp, 2003; Koren, 2010). Another systematic review and meta-analysis from Kim and Park (2017) provided further evidence for person-centred care in clinical practice for people with dementia. Brooker (2004) outlined the four key aspects integral to a person-centered care approach for PWD and these components are: (a) valuing and respecting persons with dementia and their carers; (b) treating people with dementia as individuals with unique needs; (c) understanding the perspective of PWD and (d) creating a positive social environment in which PWD can experience. Thus, it is vital to identify strategies and interventions to enhance the care and experience of PWD in long term care facilities, in order to enable them to receive the best care whilst retaining their level of functioning, respecting dignity and ensuring their safety and wellbeing.

(iii) Role of volunteerism in a dementia palliative care setting

In palliative care setting, nurses are largely involved in managing the physical, psychological, emotional symptoms experienced by patients. Especially in an advanced dementia setting, nurses often suffer from emotional exhaustion when having to deal with increased clinical demands from PWD and their families. A national survey conducted in Germany revealed that more than half of the surveyed practitioners felt burdened when they are unable to achieve objectives of palliative care, with most of them identifying relationship building with patients and families and frequent patients death as burdening factor (Müller et al, 2009). As palliative care practitioners are responsible for providing the majority of end-of-life care, it is physically demanding and stressful for them if they have to continue providing 100% of companionship and support to the patients and their families. A study by McDonnell et al (2014) reported that volunteer intervention were highly valued by nurses and their active presence with patients meant that nurses are able to concentrate on tasks that only qualified nurses can perform, such as the administration of medications. Staff also appreciated the presence of volunteers as they are able to concentrate on nursing tasks, knowing that the patient are under good companions.

Hospice palliative care volunteers can be a tremendous source of support, comfort and companionship for patients and family members living with life-limiting illnesses. The findings from a systematic review of qualitative studies by Burbeck et al (2014), suggested that a volunteer role is largely distinct from that of a paid staff, and is generally social in nature. In a palliative care setting, volunteers contribute by: (i) direct patient support; (ii) providing clinical support services such administrative role and (iii) fund-raising. The data from the National Hospice and Palliative Care Organisation (2012) showed that 60% of volunteer contribution is in direct patient support. Volunteers not only provide emotional or social support to patients, they also support nursing care by undertaking task-oriented activities, such as serving patients’ meals and drinks.

The reason why volunteers in palliative care chose to be volunteers because they have had experience with serious illness and death with their closed ones and they wish to help and care for suffering patients ( Jack et al, 2011). Volunteering often provide them with benefits such as growth, satisfaction and an understanding of what is important in life (Claxton-Oldfield, 2015; Andersson & Ohlen, 2005; Soderhamn et al, 2017).

(iv) Challenges for volunteers in dementia palliative care setting

Being a volunteer in palliative care is known to include a lot of stress. Volunteers without sufficient training are often challenged in responding to dementia-linked behaviours, which can lead to frustrating difficulties during interaction. Whilst volunteers may be evidenced to enhance the care of hospital inpatients in other settings, people with dementia require specialist care. One of the significant challenges faced by both formal and informal care providers in dementia palliative care, is the lack of training and education. Training is critical to ensure that palliative care volunteers are prepared for their role in supporting dying persons and their families. Studies have shown that volunteers generally felt more significantly able to cope with bereavement after receiving training experience (Claxton-Oldfield et al, 2007; Stecho et al, 2012).

Another challenge highlighted was that often medical professionals are not well educated in palliative care. Without appropriate training or guidance from formal carers, volunteers found it difficult to reach out and to assist nurses with dementia-specific skills (Ryan et al, 2011). This makes quality palliative care more difficult to provide.

3.1. Research Gap (200 words)

Our literature review found that experience of palliative care patients and their families having a volunteer involved in their care and the impact a volunteer may have on their wellbeing are understudied. There is also limited evidence that palliative care interventions that involve volunteers have a positive impact on family satisfaction with care and may even lengthen patient survival. With the growing needs of ageing populations and the limitation in resources allocated to healthcare, there are increasing numbers of papers suggesting a partial shift from formal healthcare services towards community care through volunteerism. However evidence supporting the feasibility of such a shift is insufficient. The extent of relevant training and barriers to maintaining a volunteer workforce are also unknown.

More in-depth research on the effect of volunteering for the volunteers would identify the benefits as well as the areas needed for support and training to ensure the successful retention of volunteers and to maximise the potential benefits of volunteerism scheme to everyone involved.

4. Research Aims (52)

The aim of this study is to understand the perceptions and experiences of trained volunteers in caring for patients in dementia-palliative ward in Singapore. This study will also seek to explore the trained volunteers’ reasons in providing care, as well as their motivation to continue volunteering and challenges faced in dementia-palliative ward in Singapore.

5. Methodology (900)

5.1. Research Design

A descriptive qualitative study design will be adopted for this study. Such design seeks to understand a phenomenon and explore the perspectives of the people involved where time and resources are limited. Additionally, it is particularly relevant to use a hermeneutic phenomenological approach as this study intends to explore and reveal the experiences of the participants and also the interpretations of their experience using interviews and the analysis of the sampling (Malagon-Maldonado, 2014).

5.2. Sampling

The population for this study is dementia care volunteers. Purposive sampling will be utilised to recruit volunteers from Assisi Hospice (Robinson, 2014). The estimated number of participants will be 20. Data will be collected until data saturation is reached – when fresh data collected no longer provides any new or relevant data.

The inclusion criteria for participants are those who:

1. Are above 21 years of age.
2. Can converse in English.
3. Have undergone 2-days training workshop as carers, provided by Assisi Hospice.
4. Have at least 6 months of regular volunteering, with minimum commitment of once per week at any timing.
5. Have experiences in volunteering in dementia and/or non-dementia wards.

The exclusion criteria for participants are those who:

1. Have been diagnosed with any cognitive issues.
2. Have hearing and/or visual impairments.
3. Have any terminal illness.

These criteria ensure the reliability of the data collected, heterogeneity and representativeness of the sample population.

5.3. Interview Guideline Development

An interview guideline (Appendix A) will be developed by _. Therefore, this study can fulfil the key research aims, which include the reasons for volunteering, their perceptions of volunteering in dementia-palliative ward, their motivations and challenges faced when caring for patients in dementia-palliative ward. After developing the guideline, it will be sent to experts from the National University of Singapore and Quality and Research Work Group of Assisi Hospice, as well as the volunteer coordinators of Assisi Hospice. A pilot study will then be conducted to test the interview guideline with two volunteers and be refined before using it in the main study.

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5.4. Data Collection Procedure

A descriptive qualitative research design is used to collect data via face-to-face semi-structured interview. Such interview approach is chosen due to its adaptability and ability to provide detailed descriptions of the participants’ experience in large amount (Sandelowski, 2000). Interviews are conducted at the convenience of their schedule without any inconvenience or interference to the private time of the volunteers.

After obtaining ethics approval, the volunteers will be selected based on the inclusion and exclusion criteria through purposeful sampling. The researcher will approach the volunteers at Assisi Hospice to provide more study information using a Participant Information Sheet (Appendix B). Written consent and voice-recording consent forms (Appendix C) will then be provided for the volunteers who are willing to participate in the study. A demographic profile questionnaire (Appendix D) will be given to the volunteers for the assessment of volunteers’ socio-demographic characteristics such as their age, gender, volunteer experience, training in palliative care, and their knowledge and attitude towards palliative care. The interview will be conducted in a room, where it is quiet and cooling enough to provide a comfortable and conducive environment to facilitate an interview with volunteers. Should the interview be interrupted by any situations, the researcher will resume the interview thereafter.

All interviews will be conducted in English by the researcher to prevent mistranslation. All interviews are held at Assisi Hospice. The interviews will be recorded and transcribed verbatim to enhance credibility of data. Field notes will be taken during interview. Ample time will be given to the participants to reduce any time-related stress. Follow-up questions such as “can you tell me more about that?”, “What did it mean for you” and “Can you elaborate on it?” were asked to obtain richer descriptions. Each interview will last up to 60 minutes.

5.5. Ethical Considerations

Ethics approval for the study will be obtained by Alice Lee Centre for Nursing Studies (ALCNS) and the management committee of Assisi Hospice. At the time of enrolment, the protocol and nature of study will be explained thoroughly to the participants to obtain their consent. Participants will be guaranteed anonymity, and voluntary participation will be emphasised. They are also informed that they are free to withdraw from the study at any time and their refusal to participate will not affect them in any way.

5.6. Data Analysis

Interviews will be transcribed verbatim and anonymised during data analysis, thus removing identifying features. Thematic analysis will be used to analyse the data collected (Jack et al, 2018).

5.7. Rigor of Study

Lincoln and Guba’s framework are adopted to ensure that rigour is in place throughout the study process. The framework comprises of credibility, dependability, confirmability and transferability (Guba & Lincoln, 1994).

6. Study Significance (200)

Due to the demands of an ageing population and low manpower supply, many countries, including SIngapore, are pushing for a partial shift from formal health care services to community care. There is an increased emphasis on patient-centred care and advance care planning, to fulfil the needs of patients in the last days of life, as well as those of their caregivers and families. However the feasibility of such a shift is still not evident in most countries. Many studies showed that volunteer presence not only can offer practical and emotional support to patients, but is able to ease resource constraints in professional healthcare of palliative care setting. But the extent of relevant training and barriers to maintaining a volunteer workforce are still unknown.

This study will provide beneficial insights into reasons and factors influencing volunteers choosing to contribute in palliative care settings in Singapore. The information will be a good direction for future research to construct a national or organizational level framework for recruitment and training of more volunteers to assist in community-based care. The result can also provide a platform to discuss issues regarding strategies to improve palliative care at a national level.

7. Proposed Timeline

Milestones

Target Duration

Year 2019

Year 2020

May

Jun

Jul

Aug

Sep

Oct

Nov

Dec

Jan

Feb

Mar

Literature Review

Completion of Research Proposal

Obtaining ethics approval

Pilot Study

Data Collection

Data Analysis

Revision of study and manuscript preparation

8. References

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