Volunteer peer support and befriending for carers of people living with dementia: An exploration of volunteers’ experiences

With ageing populations and greater reliance on the voluntary sector, the number of volunteer‐led peer support and befriending services for carers of people with dementia in England is set to increase. However, little is known about the experiences of the volunteers who deliver these interventions, many of whom are former carers. Using in‐depth semi‐structured interviews with 10 volunteer peer supporters and befrienders, this exploratory study investigated volunteers’ experiences of delivering the support, the types of relationships they form with carers and their perceptions of its impact upon them and on carers. Data were analysed using framework analysis. Findings showed that volunteers benefitted from their role due to the ‘two‐way’ flow of support. Experiential similarity and having common interests with carers were considered important to the development of mutually beneficial relationships. Volunteers perceived that carers gained emotional and social support, which in turn improved the carers’ coping ability. Being able to see positive changes to carers’ lives was important for volunteers to gain enjoyment and satisfaction from their role. However, volunteers also identified challenges with their role, such as dealing with carers’ emotions. Future research should investigate ways of reducing potential burden on volunteers and explore the impact of volunteering specifically on former carers of people with dementia.     

Informal caregivers of people with an intellectual disability in England: health,quality of life and impact of caring

There is wide variation in reported impact of caring on caregiver well‐being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population‐representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability (N = 260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio‐demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care‐giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar‐sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well‐being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population‐representative data. Poverty and long care‐giving hours may make caregivers more susceptible to negative well‐being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors.     

Caring hours and possible need for employment support among primary carers for adults with mental illness: Results from an Australian household survey

Intensive unpaid caring is associated with greater likelihood of not being employed, but impacts for mental health carers specifically remain unknown. This study aimed to: (a) examine the association between caring intensity and not being employed for primary mental health carers, (b) ascertain whether this relationship differs from that for other disability carers, (c) enumerate Australian primary mental health carers with a possible need for employment support and (d) describe these carers’ unmet support needs and barriers to employment. Co‐resident, working age primary mental health (n = 137) and other disability carers (n = 821) were identified in the Survey of Disability, Ageing and Carers (collected July‐December 2015). Multiple logistic regression analyses examined associations between levels of caring intensity (1–9, 10–19, 20–39, 40+ hr/week) and not being employed. A ‘possible need for employment support’ indicator was derived from information about current employment status, caring hours, past impact of caring on employment and desire for more work or workplace accommodations. After controlling for demographic and caring role factors, mental health carers providing 40+ hr of care weekly had greater odds of not being employed compared to carers providing <10 hr (AOR 13.38, 95% CI: 2.17–82.39). For other disability carers, the odds of not being employed were also higher among those providing 20–39 hr of care (AOR 3.21, 95% CI: 2.18–4.73). An estimated 54.1% (95% CI: 43.1–64.8) of carers had a possible need for employment support, with the proportion increasing as level of caring intensity increased. Of carers who were not employed, 42.2% (95% CI: 30.3–55.0) reported a desire to work, and the main reported barrier was no alternative care arrangements or disruption to the person supported. Findings suggest that improving employment participation for mental health carers requires a greater balance between unpaid care and access to formal services for people with mental illness.     

“Something that happens at home and stays at home”: An exploration of the lived experience of young carers in Western Australia

There are approximately 350,000 young carers in Australia, yet their experience is not well understood. Young carers face adversities and disenfranchisement by being a young person in a caring role, and the role can affect other areas of their lives. We explored the lived experiences of young carers, aged 14–25 years (N = 13), from Western Australia through in‐depth semi‐structured interviews. A phenomenological approach was adopted. A thematic analysis of the transcribed interview data revealed four key themes. “Lessons from the experience” articulates the perceived benefits of the role and the themes: “navigating competing demands,” “desire for normalcy” and “lost in the system” capture the struggles and complexities associated with being a young carer. Although there are challenges to being a young carer, it is something that young carers report can be beneficial and something that is done for those they love.     

Volunteer bias in human sexuality research: Evidence for both sexuality and personality differences in males

The extent to which personality, social behavior, and sexuality differed in undergraduate males under two different types of recruitment, volunteer and nonvolunteer, was investigated. Nonvolunteers (N=160) were ostensibly recruited for a study on personality, and volunteers (N=204) were overtly recruited for a study on human sexuality. Both samples completed the same personality, social behavior, and sexuality questionnaires. Volunteers were found to be more sexually experienced, more interested in sexual variety, and more erotophilic than the nonvolunteers. In addition and contrary to most prior research, the volunteer and nonvolunteer samples also differed in personality and social behavior, with the volunteers being higher in sensation seeking and lower on measures of social conformity and rule-following behavior than the nonvolunteers. Results extend prior research suggesting limits to the generalizability of some human sexuality research. This paper was completed while the author was a Social Science and Humanities Research Council of Canada Postdoctoral Fellow.     

Evaluation of trained volunteer doula services for disadvantaged women in five areas in England: women's experiences

Disadvantaged childbearing women experience barriers to accessing health and social care services and face greater risk of adverse medical, social and emotional outcomes. Support from doulas (trained lay women) has been identified as a way to improve outcomes; however, in the UK doula support is usually paid‐for privately by the individual, limiting access among disadvantaged groups. As part of an independent multi‐site evaluation of a volunteer doula service, this study examined women's experiences of one‐to‐one support from a trained volunteer doula during pregnancy, labour and the post‐natal period among women living in five low‐income communities in England. A mixed methods multi‐site evaluation was conducted with women (total n = 137) who received the service before December 2012, using a combination of questionnaires (n = 136), and individual or group interviews (n = 12). Topics explored with women included the timing and nature of support, its impact, the relationship with the doula and negative experiences. Most women valued volunteer support, describing positive impacts for emotional health and well‐being, and their relationships with their partners. Such impacts did not depend upon the volunteer's presence during labour and birth. Indeed, only half (75/137; 54.7%) had a doula attend their birth. Many experienced volunteer support as a friendship, distinct from the relationships offered by healthcare professionals and family. This led to potential feelings of loss in these often isolated women when the relationship ended. Volunteer doula support that supplements routine maternity services is potentially beneficial for disadvantaged women in the UK even when it does not involve birth support. However, the distress experienced by some women at the conclusion of their relationship with their volunteer doula may compromise the service's impact. Greater consideration is needed for managing the ending of a one‐to‐one relationship with a volunteer, particularly given the likelihood of it coinciding with a period of heightened emotional vulnerability.     

Perceptions of unmet needs for community social care services in England. A comparison of working carers and the people they care for

Previous UK research has found expressed unmet need for services by unpaid working carers and among disabled and older people. There are, however, suggestions from research that views on unmet needs for services differ between carers and care‐recipients. Working carers in the UK say that the care‐recipient is sometimes reluctant to accept services and the few international comparative dyad studies that have been carried out find that carers perceive higher unmet need than care‐recipients. Recent policy discussions in England have also recognised that there may be differences of opinion. We collected data in 2013 from working carer/care‐recipient dyads in England about perceived need for services for the care‐recipient, disability, unpaid care hour provision and individual and socio‐demographic characteristics. We find that care‐recipients as well as their carers perceive high unmet need for services, although carers perceive higher unmet need. For carers, unmet need is associated with the disability of the carer‐recipient and being the daughter or son of the care‐recipient; for care‐recipients it is associated with unpaid care hours, carers’ employment status and carers’ health. The majority of dyads agree on need for services, and agreement is higher when the working carer provides care for 10 hours or more hours a week. Services for care‐recipients may enable working carers to remain in employment so agreement on needs for services supports the implementation of legislation, policy and practice that has a duty to, or aims to, support carer's employment.     

A person‐centred approach to family carer needs assessment and support in dementia community care in Western Australia

This feasibility study aimed to identify and address the support needs of family carers (FCs) of people living with dementia and to assess whether the use of the Carer Support Needs Assessment Tool (CSNAT) intervention in home‐based care was acceptable and relevant to FCs. The CSNAT intervention comprised two FC support needs assessment visits, 7 weeks apart, plus associated actions addressing prioritised needs by the Client Care Advisors of a community care service in Western Australia in 2015. Telephone interviews were conducted with FCs on their experience using the CSNAT at the end of the intervention. Twenty‐one FCs were involved in the intervention and 15 of them completed the feedback interviews. Care recipients had moderate to severe dementia. The top five support needs reported by FCs were: having time to yourself in the day; knowing what to expect in the future; practical help in the home; looking after your own health and dealing with your feelings and worries. Three themes summarised their experience: a straightforward structured approach; awareness, acknowledgement and acceptance of their situation; and provision of support. FCs appreciated the opportunity to be heard and acknowledged, to have their practical and psychosocial support needs facilitated, to identify what is important to them and to receive a response in a timely manner. The CSNAT approach offered a structured carer‐led, person‐centred, supportive intervention that facilitated discussion between the family carer and the service provider about support needs and strategies to address them.     

Pre‐ and post‐training evaluation of dental efficacy and activation measures in carers of adults with disabilities in South Australia – a pilot study

The aim of this pilot study was to train carers to provide oral care for adults with disabilities and to evaluate the training programme. Forty‐one carers of 103 care recipients from three disability organisations in South Australia were trained in providing oral care for adults with disabilities (April 2013–April 2014). The training included an oral presentation and practical session by a special needs dentist on completing oral health assessments (OHA), developing oral healthcare plans, providing oral hygiene care and assessing the need for dental referral. Continued support was provided via home visits by dental hygienists for the first 2 months and a dentist visit at 3 months. At 6 months, agreement on OHAs between the dentist and trained carers was assessed. Pre‐ and post‐training questionnaires (at 6 months) collected information on dental behaviours of carers and psychosocial factors: carer activation measure‐knowledge (CAM‐Knowledge), carer activation measure‐skills (CAM‐Skills), carer activation measure‐confidence (CAM‐Confidence) and carer dental efficacy (CDE) items (carer diligence, self‐efficacy and priority). Post‐training (among 16 retained carers), there were significant increases in the mean scores of CAM‐Knowledge and CAM‐Confidence, but not for CAM‐Skills (paired‐samples t‐tests, α = 0.05). Per cent agreement of CDE items varied little between questionnaires. Carer–dentist agreement on OHAs was generally high with kappa values ranging from 0.63 for the assessment of gums to 1.0 for the assessment of tongue, roof of mouth, denture and dental pain. Further, carers were able to assess the need for referral of their care recipients’ oral health similar to the dentist. These findings suggest that with combined theoretical and practical training and continued support, non‐dental professionals like carers can improve their knowledge and confidence in providing oral care for adults with disabilities. However, the findings of this pilot study need to be confirmed by further research in a larger study.     

Perceived needs of carers of people with psychosis: An Australian longitudinal population‐based study of caregivers of people with psychotic disorders

Studies have documented the perceived needs of carers of people with psychosis but most recruitment has utilised convenience sampling resulting in limited understanding of carers’ needs. This longitudinal study was conducted within the second Australian prevalence study of psychosis, aiming to obtain generalisable findings regarding perceived needs of carers of people with psychosis. Semi‐structured interviews were conducted with 98 carers of people with psychosis recruited in the Australian prevalence study of psychosis. Seventy‐eight of the carers were reinterviewed 1 year later to measure changes in their perceived needs. Correlational and paired T tests were conducted to identify relationships between perceived needs and carer's health and well‐being, and changes in levels of perceived needs over time. Qualitative responses were structurally coded by segmentation according to the Carers’ and Users’ Expectations of Services—Carer version. Thematic analysis of common words and phrases was undertaken to identify key themes concerning carers’ perceived needs. There was minimal improvement in carers’ perceived needs over time and their needs were closely related to their perception of their own social connectedness, psychological health and quality of life. Five themes were identified: Greater involvement of carers in the treatment plan, provision of relevant information to carers, multiple biopsychosocial support for carers, well‐being and independence interventions for people with psychosis, and choice to care and alternate caring arrangements. Although policy recognises the need to support carers, findings show that focused interventions are required to address carers’ perceived needs more holistically in current mental health services. To support carers’ recovery, services need to include carers in treatment planning, and consider ways to address their needs and improve their own health and well‐being.     

‘I need help’: Reasons new and re‐engaging callers contact the PANDA—Perinatal Anxiety and Depression Australia National Helpline

In Australia, the PANDA—Perinatal Anxiety & Depression Australia National Helpline (the Helpline) offers support to callers impacted by emotional health challenges in the perinatal period. Callers receive counselling from professional staff and peer support from volunteers. An understanding of factors that contribute to callers’ experiences of emotional distress, as well as potential barriers and facilitators to help‐seeking, can be used to inform future service design and delivery. A caller intake form is completed by Helpline staff when an individual contacts the service for the first time, or re‐engages after a period of non‐contact. We analysed all intake forms of individuals calling about their own emotional wellbeing from the middle month of each season in 2014: January, April, July, and October. Content analysis was undertaken, focusing on caller profile, patterns of help‐seeking, and reasons for caller engagement. Of the 365 calls, the majority were from women (n = 358, 98%) who were pregnant (n = 59, 16%) or had a child ≤12 months of age (n = 241, 75%). Many were seeking support regarding depression (n = 186, 51%) or anxiety (n = 162, 44%), with a number seeking help for both (n = 71, 20%). Almost a third were identified as being ‘at risk’, including a number who were experiencing thoughts of suicide or self‐harm. Complex interrelating factors contributed to callers’ emotional distress, including: stressful life events; pregnancy, birthing and parenting experiences; social isolation; and histories of mental health difficulties. Significant numbers of parents experience emotional health challenges in the perinatal period, but many do not receive adequate treatment. Complex factors contribute to callers’ distress, highlighting the need for health professionals to undertake thorough psychosocial assessments during the perinatal period so those that need additional support are identified, and appropriate care provided. Telephone Helplines like PANDAs assist overcoming barriers to care and provide specialised perinatal mental health support to families.     

Eldercare Volunteers and Employees: Predicting Caregiver Experiences from Service Motives and Sense of Community

Volunteers (n = 52) and eldercare employees (n = 160) completed measures of personal motives, sense of community, and satisfaction and stress from assisting the elderly. Caregiver satisfaction was best predicted for volunteers by feelings of reciprocal responsibility to peers. For employees, satisfaction was predicted by strong motives reflecting one’s personal values, heightening self-esteem, gaining an understanding of the elderly, and a need to socialize with others. Caregiver stress for volunteers was predicted by motives of low self-esteem, high needs for protection from similar illness, and a desire toward enhancing one’s personal career goals. For employees, stress was predicted by low levels of reciprocal responsibility and a desire for protection. Results suggest that eldercare satisfaction and stress are predicted by different variables for volunteer and employees requiring different program development for recruitment and retention. Editors’ Strategic Implications: The findings have implications for the way elder care administrators prevent worker and volunteer turnover and thus promote client welfare. Measures of personal motivation and community connection may be relevant to other prevention settings as well.     

Social participation among older adults (55+): Results of a survey in the region of South Limburg in the Netherlands

Social participation may improve the health and well‐being of older adults, and may increase the social and human capacity of their communities. This study investigates the level and forms of social participation among older adults (aged 55 years or older) in the region of South Limburg, the Netherlands, and their association with socio‐demographic and health‐related characteristics. The study provides evidence that can be used by policy makers to enhance social participation in the region. We use cross‐sectional data collected in a survey in 2012 among a sample of older adults (aged 55 years or older) representative for the region of South Limburg. The results indicate that 56% (N = 16,291/weighted sample N = 213,332) of the older adults in the region participate in social activities. Specifically, 25.5% perform paid labour, 20% give informal care and 25% participate in volunteer work. Older adults with a higher education (OR = 2.49 for the highest education group) or higher income (OR = 1.70 for the highest income group) are significantly more likely to participate in social activities compared with the respective reference categories. Increased age (OR = 0.23 for the oldest age group), female gender (OR = 0.83), loneliness (OR = 0.75 for severe loneliness) and restrictions (OR = 0.78 for restrictions on the OECD scale, OR = 0.68 for restrictions on the HDL scale, OR = 0.52 for transportation restrictions) significantly hinder social participation. The lower social participation rate among older adults that we observe compared with the national statistics can be explained by the relatively higher proportion of people with low or average socioeconomic status in South Limburg. And as South Limburg is the unhealthiest region of the Netherlands, this also contributes to the low social participation. Prevention of poor physical and mental health, and provision of care services are important to encourage social participation among the older adults in South Limburg.     

The physical functioning and mental health of informal carers: evidence of care‐giving impacts from an Australian population‐based cohort

Informal carers represent a substantial proportion of the population in many countries and health is an important factor in their capacity to continue care‐giving. This study investigated the impact of care‐giving on the mental and physical health of informal carers, taking account of contextual factors, including family and work. We examined health changes from before care‐giving commenced to 2 and 4 years after, using longitudinal data from the Household Income and Labour Dynamics in Australia survey. The sample comprised 424 carers and 424 propensity score‐matched non‐carers. Health was self‐assessed, measured with the SF‐36 Health Survey Mental Health (MH) and Physical Functioning (PF) scales. Care‐giving was classified as non‐carer, low (<5 hours/week), moderate (5–19 hours/week) and high (20 or more hours/week). PF and MH change scores were regressed on baseline scores, care‐giving, covariates (including work, family and socio‐demographic characteristics) and interactions to identify impacts for subgroups. The physical and mental health impacts differed by gender, and care‐giving hours and carer work hours were important contextual factors. Deterioration in both PF and MH was worse for females after 2 years and deterioration in MH was worse for males after 4 years. Among carers aged 40–64 years, there was a 17‐point decline in PF (P = 0.009) and a 14‐point decline in MH (P < 0.0001) after 2 years for female high caregivers working full‐time and 9.3 point improvement (P = 0.02) for non‐working male high caregivers. Change was not significant for non‐carers. The study found that not all carers suffer adverse health impacts; however, the combination of high levels of care‐giving with workforce participation can increase the risk of negative physical and mental health effects (particularly in female carers). Working carers providing high levels of care represent a vulnerable subgroup where supportive and preventive services might be focused.     

Rethinking respite in Australia: A naturalistic effect study of a multicomponent community program to promote respite knowledge,attitudes and behaviours of carers of people with dementia

‘Rethink Respite’ was a prospective, naturalistic cohort study conducted in the Illawarra-Shoalhaven (NSW, Australia) to improve knowledge, attitudes and uptake of respite strategies in carers of people with dementia. A convenience sample of n = 70 carers were recruited in 2014–15 to establish a baseline for knowledge, attitudes and use of respite for a cohort of carers in the region. Carer perceived need for respite, burden and self-efficacy were also assessed. A co-designed multi-component community-based intervention was subsequently rolled at in the region from 2015 to 2016. The intervention supported: awareness raising media; carer education sessions; access to web and print respite information resources; and an option to participate in a tailored one-on-one in-home coaching program. At program completion, a follow-up survey was administered to the cohort, with n = 44/70 responding. All n = 44 respondents reported participation in and exposure to ‘Rethink Respite’ media, information and education during the intervention period. Eighteen of the 44 also self-selected to receive the active tailored coaching support. At follow-up, few positive results were reported on the assessed carer variables for the cohort over time. However, post hoc sub-group analyses found those who also self-selected to receive active support (provided through coaching) (n = 18), showed improvements to their respite knowledge, attitudes and self-efficacy (p < .05). Intention to use respite, and levels of personal gain from caring in this sub-group also increased (p < .05). In contrast, carers who only participated in the informational/educational aspects of the program (and did not self-select to the respite coaching), experienced negative changes over time to their respite beliefs and ‘role captivity’. Overall, this pilot study suggests that passive respite information and educational strategies are insufficient, without more active supports (tailored respite coaching) to address observed carer decline over time. Future research should seek to replicate these results using a larger sample and an experimental design.     

Development of the Volunteer Peer Educator Role in a Community Cardiovascular Health Awareness Program (CHAP): A Process Evaluation in Two Communities

Volunteers can support the delivery and sustainability of programs promoting chronic disease awareness to improve health at the community level. This paper describes the development of the peer education component of the Cardiovascular Health Awareness Program (CHAP) and assessment of the volunteer peer educator role in a community-wide demonstration project in two mid-sized Ontario communities. A case study approach was used incorporating process learning, a volunteer survey and debriefing discussions with volunteers. A post-program questionnaire was administered to 48 volunteers. Five debriefing discussions were conducted with 27 volunteers using a semi-structured interview guide. Discussions were audio-recorded and transcribed. Analysis used an editing approach to identify themes, taking into account the community-specific context. Volunteers reported an overall positive experience and identified rewarding aspects of their involvement. They felt well prepared but appreciated ongoing training and support and requested more refresher training. Understanding of program objectives increased volunteer satisfaction. Volunteers continued to develop their role during the program; however, organizational and logistical factors sometimes limited skill acquisition and contributions. The prospect of greater involvement in providing tailored health education resources addressing modifiable risk factors was acceptable to most volunteers. Continued refinement of strategies to recruit, train, retain and support volunteers strengthened the peer education component of CHAP. The experience and contributions of volunteers were influenced by the wider context of program delivery. Process evaluation allowed program planners to anticipate challenges, strengthen support for volunteer activities, and expand the peer educator role. This learning can inform similar peer-led health promotion initiatives. This study has been conducted by the authors for the CHAP Working Group.     

Beyond mere pill taking: SMS reminders for HIV treatment adherence delivered to mobile phones of clients in a community support network in Australia

SMS reminders sent to personal mobiles are increasingly used by clinical services to promote patient engagement, including adherence to antiretroviral treatment (ART) for HIV. From August to September 2015, a 6‐week, randomised SMS reminder for ART adherence intervention was implemented among 98 HIV‐positive clients of Australian's largest HIV charitable organisation located in Sydney. This was followed by a mixed‐method evaluation, comprising a self‐completed online survey and a one‐to‐one interview. Of the 62 survey participants, all being men, the majority were gay (85.5%) and living long‐term with HIV (median year of HIV diagnosis = 1998). While everyone was on ART, a substantial proportion (n = 27, 43.5%) had interrupted treatment in the past. At the end of the intervention, based on the standard SMAQ measure, 82% had consistently adhered to ART in the previous week. While there was no statistically significant intervention effect, perceiving less stigma were independently associated with better ART adherence (adjusted odds ratio = 0.37; 95% CI 0.16–0.89; P = .026). Of the 11 interviewees, despite limited add‐on effects on individual ART adherence, the campaign was well‐received as a unique community support service. This study underscores the essential role of empowerment through enhancing disease self‐management, increasing social support and reducing stigma, particularly for long‐term HIV survivors. SMS messaging, part of mHealth, delivered by community services could have broader impacts on reducing health and social inequity.     

Improving Life Satisfaction for the Elderly Living Independently in the Community: Care Recipients' Perspective of Volunteers

With an aging population who wish to remain living in the community, this article explores the experiences and benefits of receiving volunteer services from a home support program established to assist people with increasing needs to remain living independently. Face to face interviews explored how the services of informal carers (volunteers) provided through the program made a difference to the daily lives of 16 recipients. Improved life satisfaction was identified through the themes of being helped with daily activities, positive human contact, and fear of a poorer quality of life. It was found that addressing recipients' social, emotional, and mobility needs supported them to remain living at home.