what do informal caregivers need to manage their responsibilities?

what do informal caregivers need to manage their responsibilities?


International psychiatric reform, community-based care and social integration of people with psychosis into society have resulted in new responsibilities for informal caregivers. These caregivers are usually family members, friends or neighbours, who provide daily and unpaid support to individuals with psychotic disorders (Savage & Bailey, 2004).

Research highlights how having several roles and more responsibilities can have negative impacts on caregivers’ self-esteem, coping skills and problem-solving abilities (Saunders, 2003). Additionally, informal caregivers can experience a lack of control as well as feelings of helplessness and guilt (McCann et al., 2009).

The objective needs of caregivers refer to those related to the patient’s behaviour, social, economic and family burden, as well as health and leisure issues (Rhoades, 2000). As caring for an individual with psychosis can be extremely demanding, caregivers usually have to reduce working hours, impacting on their life and well-being (Hansen & Slagsvold, 2014). Additionally, they face restrictions in daily and social activities and leisure (Dunn & Strain, 2001).

The needs of these informal caregivers have not been thoroughly investigated within the Greek context. Thus, Moudatsou et al. (2021) conducted a qualitative study aiming to investigate the views of mental health professionals on the needs of informal caregivers of patients with chronic psychotic syndrome in Greece.

Research suggests that providing informal care for an individual with psychosis can negatively impact on carers’ financial, psychological and social needs. This study explores the views of mental health professionals on the needs of informal caregivers of patients with psychosis in Greece.

Research suggests that providing informal care for an individual with psychosis can negatively impact on carers’ financial, psychological and social needs. This study explores the views of mental health professionals on the needs of informal caregivers of patients with psychosis in Greece.

Methods

A purposeful sampling strategy was utilised to recruit mental health professionals from public healthcare services in a city in northern Greece. The sample consisted of 12 mental health care professionals: social workers, psychologists, and psychiatrists with at least one year of experience with informal caregivers for people with psychosis.

In the semi-structured, face-to-face interviews, the mental health professionals were asked open-ended questions addressing the following areas:

  1. Feelings and responsibilities of caregivers
  2. Needs of caregivers
  3. Degree to which their needs are met
  4. How these needs might be effectively fulfilled in the future.

The interviews were analysed by a multidisciplinary research team, utilising framework analysis to extract broad categories and specific themes from the data, as described by Furber (2010).

Results

Impact of caregiving on caregivers’ lives

Mental health professionals believed that caring for an individual with psychosis differs from caring for someone with a physical illness. They described the increased responsibilities caregivers face, including follow-up and urgent care visits. These caring issues appear to have a significant impact on caregivers’ lives, as they undertake full responsibility for the patient’s care. Caregivers of patients with chronic psychotic syndrome experience impacts in several domains of their lives, namely, financial and professional burdens, social constraints and a negative impact on their physical and mental health.

Caregivers’ needs

Many caregivers of patients with chronic psychotic syndrome often experience financial strains. The professionals highlighted the need for financial support, due to the small allowances that patients receive.

Additionally, many participants referenced the carers’ need for psychosocial support. The mental health professionals postulated that a collaborative professional-caregiver approach, group psychotherapy and self-help groups may address these issues.

Participants felt that support for caregivers in terms of consultation, information on disease management and referrals would alleviate feelings of helplessness and ambiguity. They believed that this could help both caregivers and patients to feel less alone.

Recommendations for better care

Participants stated that appropriate interventions for addressing caregivers’ needs and for improving the quality of healthcare services may have a direct benefit on patients and caregivers. Mental health professionals seemed to recognise this issue, for instance acknowledging:

we rarely focus on the caregivers’ burden.

Organisational innovations, novelty in policy making, and involving stakeholders in organisational planning were recommended actions for better care, as:

[the caregivers] are the ones who know what they really need.

Mental health professionals reflected on the increased responsibilities caregivers face, the impact these roles have on their daily lives, caregivers’ financial and psychosocial needs, and recommendations for better support for these individuals. 

Mental health professionals reflected on the increased responsibilities caregivers face, the impact these roles have on their daily lives, caregivers’ financial and psychosocial needs, and recommendations for better support for these individuals.

Conclusions

Overall, the findings of this study reflect that caring for individuals with chronic psychotic syndrome has a significant impact on their informal caregivers’ daily life in Greece. Mental health professionals believe that informal caregivers’ personal and family lives are severely affected by their increased responsibilities. Additionally, professional constraints coupled with economic, social and health deterioration are emerging problems for caregivers.

This study highlighted the significant impact that caring for individuals with chronic psychotic syndrome has on caregivers’ lives in Greece.

This study highlighted the significant impact that caring for individuals with chronic psychotic syndrome has on caregivers’ lives in Greece.

Strengths and limitations

The use of qualitative research methods allowed for in-depth investigation of how mental health professionals assess the needs of informal caregivers of people with chronic psychotic syndrome. This study provided valuable insight specifically into how these requirements are perceived by professionals in the Greek context.

This study was led by an experienced multidisciplinary team. The members were experts in either dealing with informal caregivers or conducting qualitative research. Additionally, framework analysis was utilised. This is an appropriate method for analysing qualitative data where multidisciplinary research teams are involved (Gale et al., 2013). Strategies such as analyst triangulation, peer review and reflexivity all contributed to the validity of this study.

Using purposeful sampling meant that the researchers could choose professionals who had 1+ year of experience with caregivers. Therefore, they could provide sufficient information on the topic under investigation. However, the researchers failed to report participant age, gender and ethnicity and only professionals from one demographic area who self-referred to the study were recruited. Without a representative sample of professionals, it is important to be cautious regarding the generalisability of the findings.

By interviewing mental health professionals exclusively, this study may have failed to reflect caregivers’ specific, unique experiences. As most mental health professionals only interact with caregivers during patient appointments, it is unlikely that they can accurately report on their subjective concerns regarding their increased responsibilities.

Interviewing informal carers may reflect their unique and subjective experiences more accurately, as caregivers only interact with mental health professionals during the patient’s appointment.

Interviewing informal carers may reflect their unique and subjective experiences more accurately, as caregivers only interact with mental health professionals during the patient’s appointment.

Implications for practice

This study specifically examined how mental health professionals assess the difficulties faced by caregivers in the Greek context. However, prior research suggests that the caregiving burden may be impacted by income and race or culture (Do et al., 2014). Therefore, it would be beneficial to replicate this research and examine how mental health professionals perceive informal caregivers’ needs in different countries, to see if they assess them differently.

The role of caregivers in the life of individuals with psychotic disorders is crucial. Therefore, supporting caregivers and their unique needs can be a key intervention to improve psychosis care and reduce the caregiver burden. These findings replicate previous research which recommends the implementation of group psychotherapy in routine community mental healthcare settings (Jolley et al., 2020).

From listening to the powerful stories of caregivers, and reading the results of this study, it is clear that the added responsibilities in taking care of a person with psychotic disorder can have a profound and detrimental impact on these individuals. In order to facilitate the process of caregiving, we need to not only provide psychological supports for caregivers, but to challenge the wider healthcare system. This is because a lack of financial support (Hansen & Slagsvold, 2014) as well as being subject to stigma can result in negative impact on caregivers’ psychological well-being (Saunders, 2003). These findings echo the need for caregivers to be involved in policy-making and organisational planning, to ensure that their mental and physical health are not subject to severe deterioration.

This study has implications for the effects of culture on the caregiving burden, psychological supports for informal caregivers, implementation of financial supports and caregiver-informed policy and planning.

This study has implications for the effects of culture on the caregiving burden, psychological supports for informal caregivers, implementation of financial supports and caregiver-informed policy and planning.

Statement of interests

None.

Links

Primary paper

Moudatsou, M., Koukouli, S., Palioka, E., Pattakou, G., Teleme, P., Fasoi, G., Kaba, E., & Stavropoulou, A. (2021). Caring for Patients with Psychosis: Mental Health Professionals’ Views on Informal Caregivers’ Needs. International Journal of Environmental Research and Public Health, 18(6), 2964.

Other references

Do, E. K., Cohen, S. A., & Brown, M. J. (2014). Socioeconomic and demographic factors modify the association between informal caregiving and health in the Sandwich Generation. BMC Public Health, 14(1).

Dunn, N. J., & Strain, L. A. (2001). Caregivers at Risk?: Changes in Leisure Participation. Journal of Leisure Research, 33(1), 32–55.

Furber, C. (2010). Framework analysis: a method for analysing qualitative data. African Journal of Midwifery and Women’s Health, 4(2), 97–100.

Gale, N. K., Heath, G., Cameron, E., Rashid, S., & Redwood, S. (2013). Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Medical Research Methodology, 13(1).

Hansen, T., & Slagsvold, B. (2014). Feeling the squeeze? The effects of combining work and informal caregiving on psychological well-being. European Journal of Ageing, 12(1), 51–60.

Jolley, S., Johns, L. C., O’Donoghue, E., Oliver, J., Khondoker, M., Byrne, M., Butler, L., De Rosa, C., Leal, D., McGovern, J., Rasiukeviciute, B., Sim, F., & Morris, E. (2020). Group acceptance and commitment therapy for patients and caregivers in psychosis services: Feasibility of training and a preliminary randomized controlled evaluation. British Journal of Clinical Psychology, 59(4), 524–551.

McCann, T. V., Lubman, D. I., & Clark, E. (2009). First-Time Primary Caregivers’ Experience of Caring for Young Adults With First-Episode Psychosis. Schizophrenia Bulletin, 37(2), 381–388.

Rhoades, D. R. (2000). Schizophrenia: A Review for Family Counselors. The Family Journal, 8(3), 258–266.

Saunders, J. C. (2003). Families Living with Severe Mental Illness: A Literature Review. Issues in Mental Health Nursing, 24(2), 175–198.

Savage, S., & Bailey, S. (2004). The impact of caring on caregivers’ mental health: a review of the literature. Australian Health Review, 27(1), 111.

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