Designing family-based interventions in kidney failure: The perspectives of the triad 'patients on haemodialysis/family caregivers/healthcare professionals
Abstract
Objectives
This study explored the perspectives of people undergoing in-centre haemodialysis, family caregivers, and healthcare professionals about the development and implementation of family-based interventions in renal care settings.
Design
A qualitative exploratory study was carried out combining purposive and snowball sampling techniques.
Methods
Semi-structured interviews were submitted to thematic analysis.
Results
A total of 82 individuals (27 adults on haemodialysis, 32 family caregivers, and 23 healthcare professionals) participated in this study. Five major themes were identified: (i) educational needs (improve disease and treatment-related knowledge; acquire better clarification on dialysis-related health behaviours); (ii) support needs (easier access to available community resources and professional psychological support; additional emotional and instrumental support from family members); (iii) expected barriers (concerns about participating in a group format; availability of the person on haemodialysis/family caregiver dyad; travel to the intervention site and associated costs); (iv) expected benefits (mutual emotional validation and support; improve family coping skills and involvement); and (v) preferences for content and format (interdisciplinary and moderated by health psychologists) and timing of the intervention (weekends and/or non-dialysis days).
Conclusions
Findings suggested that interventions focused on the family system in kidney failure need to follow an interdisciplinary approach, combining psychosocial support with an educational component. Future research is needed to minimize barriers to the conjoint participation of the person on haemodialysis/caregiver dyad. This study identifies important intervention goals to inform the design of family-based interventions for people receiving haemodialysis and their family caregivers.
Statement of contribution
What is already known on this subject?
- Thrice-weekly in-centre haemodialysis is one of the most burdensome treatment regimens for people with kidney failure and their families compared to other renal therapies.
- Renal rehabilitation programs remain focused on the person on haemodialysis, disregarding the importance of family dynamics and support for disease management.
- The perspectives of the triad people on haemodialysis/families/dialysis care professionals are extremely important to design appropriate interventions in renal care settings.
What does this study add?
- Family-based interventions in kidney failure need to follow an interdisciplinary approach, combining education with a support component facilitated by health psychologists.
- Participants anticipated that a family-based intervention could help improve people on haemodialysis/caregivers' disease-related knowledge, family coping skills to manage treatment, and caregiver involvement.
- It is important to adapt the structure and duration of family-based interventions to the limited availability of people undergoing haemodialysis and their caregivers.
- The online modality can be an alternative to minimize barriers (e.g., transport to the intervention site, time management) to the conjoint participation of people undergoing haemodialysis and their caregivers in family-based interventions.
INTRODUCTION
Worldwide, thrice-weekly in-centre haemodialysis is the most common treatment modality for kidney failure (Himmelfarb et al., 2020). In addition to an inflexible regimen of attendance to dialysis sessions, people undergoing haemodialysis need to adhere to strict dietary and fluid restrictions, care for the vascular access, practice exercise, and manage complex polypharmacy protocols to maximize treatment adequacy and survival (Fotheringham et al., 2019). All these demands cause radical lifestyle changes that can negatively affect the personal, family, and social lives of individuals on haemodialysis and their close family members (Hejazi et al., 2021). Haemodialysis has been described as the most burdensome treatment regimen for people with kidney failure compared to peritoneal dialysis, or kidney transplantation (Li et al., 2021). Consequently, this renal therapy has been frequently associated with poor adherence to medical recommendations, reduced quality of life, increased levels of psychological distress, and caregiver burden (Buemi et al., 2020).
In the past two decades, several studies have reported the effectiveness of interventions aimed at facilitating self-management of people undergoing haemodialysis. Self-management interventions aim to equip individuals with chronic illnesses with confidence to actively manage their health condition through knowledge acquisition and skills training to improve problem-solving, decision-making, symptom monitoring, self-efficacy, resource utilization, partnering with healthcare providers, and action planning (Lorig & Holman, 2003). Considering Corbin and Strauss's Self-Management Framework (Corbin & Strauss, 1998), self-management in kidney failure can involve three main tasks: (i) medical management (e.g., dealing with dialysis complications and treatment demands), (ii) behavioural management (e.g., following dietary and fluid recommendations), and (iii) emotional management (e.g., cope with anxiety, depression, fear, frustration, disruption of family dynamics). Participation in self-management programs has been associated with improvements in various health outcomes of people on haemodialysis such as quality of life, treatment adherence, and psychological distress (Griva, Lam, et al., 2018; Griva, Nandakumar, et al., 2018). However, research has shown that these positive effects are modest, often partial, and short-lasting (Bonner et al., 2014; Murali et al., 2019).
In other chronic health conditions, such as cancer, respiratory diseases and stroke, meta-analyses have already shown that interventions involving people with chronic diseases and their family caregivers as a dyad (i.e., receiving the same intervention at the same time) are more effective in improving each person's psychosocial adjustment to illness and self-efficacy to manage treatment demands, compared to interventions focused exclusively on the person with the disease or the informal caregiver (Martire et al., 2010; Shields et al., 2012; Sousa et al., 2021). Family-oriented approaches provide families with health education and psychosocial support to facilitate coping and psychosocial adjustment to the demands of chronic illness, proposing concrete guidelines for crisis management, problem-solving, and stress reduction, emphasizing the needs of the family system (Walsh, 2016).
Particularly for people undergoing in-centre haemodialysis, close family members are an important resource of support often assisting with meal preparation and adherence to dietary and fluid restrictions; ensuring transport to and from the dialysis unit; reminding them to take medication; offering encouragement and emotional support; and communicating with healthcare professionals on their behalf (Gilbertson et al., 2019). However, renal rehabilitation programs have traditionally disregarded the role of family dynamics in disease management, adjustment, and behavioural change (Sadler et al., 2014), often neglecting the conjoint family efforts to incorporate treatment demands into family routines (Grey et al., 2015). This raises the question of whether a family-based dyadic intervention in kidney failure would be more effective than individual approaches to improving (or prolonging) health outcomes for both the person on haemodialysis and the caregiver.
Since interventions focused on the family system are an innovative approach, it is important to recognize the needs and preferences of individuals on haemodialysis and family caregivers for disease management, as well as understand their barriers and motives for participating in these interventions (Donald et al., 2019; Tong et al., 2015). In this regard, a recent scoping review reported that the design of self-management interventions is predominantly theoretically oriented and/or based on researchers' perspectives, without consulting participants about the level or type of assistance they need or desire to effectively manage chronic kidney disease (Donald et al., 2018; Havas et al., 2016, 2017). In the specific context of in-centre maintenance haemodialysis, successful management can also involve healthcare professionals who interact with the person at every dialysis session (Yokoyama et al., 2009). Through the regularity and prolonged duration of this renal replacement therapy, dialysis care professionals can also help researchers gain an in-depth understanding of people with kidney failure and family caregivers' needs and preferences for disease management.
This study aimed to explore the perspectives of adults undergoing in-centre haemodialysis, family caregivers, and healthcare professionals about the development and implementation of family-based interventions delivered in a multifamily group format in renal care settings. The group format was chosen as it is the most widely practiced intervention format in family-oriented programs (Martire et al., 2010; Shields et al., 2012) and recommended to promote mutual support and sharing of experiences among families facing similar challenges, allowing the exchange of coping strategies along with the restructuring of family organization and relapse prevention (Rolland, 2019; Walsh, 2016).
METHODS
Design
An exploratory qualitative study was carried out with people undergoing in-centre haemodialysis, family caregivers, and healthcare professionals using in-depth interviews submitted to a semi-inductive thematic analysis. The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was used (Tong et al., 2007; Appendix S1).
This study is part of two larger research projects that aim to explore the needs of adults undergoing in-centre haemodialysis and their family caregivers, and the experiences of dialysis care professionals. The first project was approved by the Institutional Ethics Committee (Reference number 03/2019) and the second by the Health Sciences Research Unit: Nursing (UICISA:E P758_03_2021). All procedures performed followed the 1964 Helsinki Declaration and its later amendments. Written and/or electronic consent was obtained from all participants before data collection. Confidentiality was guaranteed by assigning each participant a numerical code.
Participants
A purposive sampling technique was used to recruit people on haemodialysis and family caregivers from two dialysis units. These units offer usual care, i.e., dialysis treatments three times a week for four hours per session, and do not include a mental health professional (psychologist or psychiatrist) in the dialysis care team. After being identified by the head nurses of each unit, these participants were visited by a researcher during a dialysis session and individually informed about the objectives of the study; in turn, family caregivers were contacted by telephone. In case of acceptance, face-to-face interviews were scheduled to be held in an office at the dialysis unit guaranteeing adequate conditions for data collection (e.g., participants' comfort, easy access, absence of interruptions, an adequate sound recording of the conversation). Participants were eligible for inclusion if they were 18 years of age or older, agreed to voluntary participation, and did not suffer from any visual, auditory, or cognitive impairment that could hinder understanding of the study purpose. Individuals on haemodialysis for less than two months were excluded; similarly, family caregivers were only considered eligible if they cared for a person receiving this treatment for at least this period. This inclusion criterion was established to ensure that the perspectives of people with kidney failure and family members at different stages of adjustment to haemodialysis were included. Family caregivers were defined as the closest family member (relative or partner) who provided the greatest amount of physical care and/or support to the person on haemodialysis without receiving any payment (Gilbertson et al., 2019). These family members may be primary or secondary caregivers who live with or separately from the person receiving care.
Healthcare professionals were considered eligible if working with adults undergoing in-centre haemodialysis for at least twelve months. This criterion was established to ensure that the dialysis care professionals in this study have experience in treating people at different stages of adjustment to haemodialysis (from crisis to chronic phase; Rolland, 2019). A snowball sampling technique was used for recruitment, as consenting nurses and nephrologists were asked to nominate colleagues who might be interested in participating. The researcher then contacted them and asked about their willingness to participate; in case of acceptance, an interview was scheduled according to their convenience. All healthcare professionals preferred to be interviewed by telephone.
Recruitment ended when no new themes emerged from the data. In the end, a total of 82 individuals – 27 adults on haemodialysis, 32 family caregivers, and 23 healthcare professionals – voluntarily participated in this study.
Data collection
A structured questionnaire was used to collect socio-demographic data (gender, age, education level, and marital status) from all participants. In addition, individuals undergoing haemodialysis gave information regarding the length of time on dialysis and family members were asked about their kinship with the cared-for person and the duration of care provided. Healthcare professionals also reported their academic background and years of experience working in haemodialysis care. Semi-structured interviews were conducted by a health psychologist with experience in qualitative research. Interview scripts included open-ended questions formulated around participants' perspectives on the development and implementation of family-based interventions delivered in a multifamily group format in renal care settings (Appendix S2).
The interviews were digitally audio-recorded and transcribed verbatim. On average, interviews lasted 42.4 ± 12.6 minutes (people on haemodialysis: 42.4 ± 12.6, range: 24–86; family caregivers: 45.2 ± 12.1, range: 21–82; and healthcare professionals: 39.5 ± 13.1, range: 20–65).
Data analysis
The interviews were subjected to thematic analysis. The interview script questions provided a framework for exploring particular aspects of participants' perspectives and therefore data were coded to fit into three broad codes: (i) people undergoing haemodialysis' and family caregivers' needs, (ii) expectations, and (iii) preferences about the development and implementation of family-based interventions delivered in a multifamily group format in renal care settings. After this, the data were ‘open-coded’ to best represent meaning as communicated by the participants. This semi-inductive approach was used to ensure that the open-coding contributed to producing themes that were meaningful to the research questions and study goals (Byrne, 2021). Braun and Clarke's (2006) recommendations for data categorization were followed, namely: (1) familiarization of the data (the transcripts were read and re-read and the initial ideas were written to obtain a comprehensive understanding of all aspects of the data); (2) generation of initial codes (codes were identified); (3) thematic research (relevant data extracts were combined or divided according to the overarching themes); (4) theme review (themes were reviewed to allow for clearer identification and distinction between them); (5) define and name themes (names of themes and potential subthemes within the data were identified to capture the essence of each theme concisely); and (6) produce the report (the most illustrative quotes were selected to exemplify themes and subthemes). Two independent researchers [HS and DF] analysed the data. After this independent analysis, findings were then compared and reviewed between researchers to reach a consensus. Agreements and disagreements were registered, and a third author was consulted in case of disagreement [OR]. The final themes/subthemes were reviewed and discussed by the entire team. Appendix S3 illustrates the process of identifying themes/subthemes.
To ensure the credibility, trustworthiness, and rigour of the data (Nowell et al., 2017), three procedures were considered: data collection triangulation, which comprises the use of different sources of information (i.e., adults receiving haemodialysis, family caregivers, and healthcare professionals) to obtain multiple perspectives with a common purpose; prolonged engagement, which consists of investing sufficient time during interviews and long-lasting engagement in the field to become familiar with the setting and context; and researcher triangulation, which involves employing multiple evaluators to analyse participants' responses. To guarantee reflexivity, the researchers attended regular meetings to discuss study-related issues and how their personal experiences and beliefs could affect data analysis; therefore, the final subthemes were the product of an interactive process of critical dialogues and discussion, including critical self-evaluation.
RESULTS
Participants' characteristics
Table 1 shows the participants' sociodemographic and clinical characteristics (n = 82)
| People on haemodialysis (n = 27) | Family caregivers (n = 32) | Healthcare professionals (n = 23) | |
|---|---|---|---|
| Gender | |||
| Female, n (%) | 11 (41%) | 23 (72%) | 18 (78%) |
| Age (years old), M ± SD | 66.5 ± 12.2 | 51.9 ± 14.7 | 38.1 ± 10.1 |
| Education (years), M ± SD | 5.85 ± 3.79 | 9.29 ± 4.38 | 16.1 ± 1.58 |
| Academic background, n (%) | |||
| Nurse | ― | ― | 19 (83%) |
| Nephrologist | ― | ― | 4 (17%) |
| Kinship with the person on haemodialysis, n (%) | |||
| Spouse | ― | 14 (44%) | ― |
| Adult children | ― | 16 (50%) | ― |
| Other | ― | 2 (6%) | ― |
| Caregiving (years), n (%) | |||
| >4 | ― | 11 (34%) | ― |
| Length of time on in-centre haemodialysis (months), M ± SD | 37.8 ± 50.7 | ― | ― |
| Length of time working in dialysis care (years), M ± SD | ― | ― | 11 ± 9.63 |
Qualitative findings
Table 2 presents the themes/subthemes identified in the participants' transcribed interviews. A summary of these findings is provided below with the most illustrative quotations (see Appendix S4 for a comprehensive quotation table).
| Theme | Subtheme | Number of appearances | |
|---|---|---|---|
| Needs | Educational needs | Improve disease and treatment-related knowledge |
P: 19 FC: 9 HCP: 13 |
Acquire better clarification on dialysis-related health behaviours
|
P: 11 FC: 20 HCP: 17 |
||
| Support needs | Easier access to available community resources |
P: 18 FC: 21 HCP: 12 |
|
| Improved access to professional psychological support |
P: 13 FC: 14 HCP: 17 |
||
Additional emotional and instrumental support from family members
|
P: 25 FC: 23 HCP: 15 |
||
| Expectations | Expected barriers | Concerns about participating in a group format |
P: 4 FC: 6 HCP: 10 |
| Availability of the dyad person on haemodialysis/family caregiver |
P: 7 FC: 10 HCP: 15 |
||
| Travel to the intervention site and its associated costs |
P: 14 FC: 12 HCP: 12 |
||
| Expected benefits | Mutual emotional validation and support |
P: 13 FC: 22 HCP: 12 |
|
| Improve family coping skills and involvement |
P: 8 FC: 10 HCP: 16 |
||
| Preferences | Content and format |
P: 15 FC: 12 HCP: 23 |
|
| Timing of the intervention |
P: 18 FC: 21 HCP: 20 |
||
Theme 1: Educational needs
This theme encompasses the participants' perspectives on the educational needs of people undergoing haemodialysis and family caregivers, namely the need to improve disease and treatment-related knowledge and obtain better clarification on dialysis-related health behaviours.
Improve disease and treatment-related knowledge
All three groups of participants mentioned the importance of increasing people with kidney failure' and caregivers' knowledge about disease aetiology and risk factors, renal replacement therapies, and laboratory test results. Specifically, individuals undergoing haemodialysis expressed a desire to receive information about online haemodiafiltration and its advantages, the parameterization of the dialysis machine, biomedical advances in the field of nephrology (e.g., bioartificial kidney, dialysis machine technology), procedures for kidney donation, and eligibility criteria for kidney transplantation: “Kidney transplantation is the most effective treatment and therefore we need to learn more about waiting times because they are very important… And also, the issue of living donors, dead donors (…)” [person on haemodialysis, 48y].
In turn, the need to better understand the purpose of haemodialysis, its benefits, and possible complications, such as fatigue, hypotension episodes, and muscle cramps, was mentioned by family caregivers: “There was a situation when my father was feeling sick and he fainted. (…) I think I should have been told earlier that this [hypotension crisis] could happen and that this is a complication of dialysis and ‘not as serious as you are thinking’” [daughter, 42y].
From the perspective of healthcare professionals, individuals on haemodialysis and their families would also benefit from further clarification on kidney transplant success/failure statistics, as this treatment is still perceived as the “cure” for kidney failure: “I think they need to be aware that transplantation is not a cure for kidney failure. (…) They are unaware that there is a long waiting list and that several criteria must be met to undergo this procedure and that it doesn't always go as expected” [nurse, 26y].
Acquire better clarification on dialysis-related health behaviours
People with kidney failure and family caregivers exposed the need for more information about the different dialysis-related health behaviours. In this regard, individuals undergoing haemodialysis specifically described the importance of discussing alternatives to balance the intake of aliments with potassium, phosphorus, and salt, especially in meals eaten away from home (e.g., family gatherings, during working hours): “At work it gets complicated. I always go out for lunch at a restaurant and the food just makes me thirstier and I end up drinking. (…) It's more about food and fluids, potassium and salt, and how can I control it in these meals” [person on haemodialysis, 52y]. Family members also reported the need for a better understanding of dietary and fluid restrictions; however, the desire to receive this information directly rather than mediated by the cared-for person was emphasized: “I need someone to explain it to me in person instead of just explaining it to my brother-in-law [person on haemodialysis]. (…) I heard he can't drink liquids, but… not at all? Not even a glass of wine at meals?” [sister-in-law, 65y]. Further clarification on fistula care (e.g., haemorrhages, bruises, hygiene) and polypharmacy management (e.g., insulin dose adjustment, anticoagulant administration) were also requested by this group of participants.
Contrasting, when questioned about people on dialysis' and their caregivers' educational needs, nurses and nephrologists from this study stated that information was available and easily accessible through internet searches or express requests to the dialysis care team: “(…) Patients have regular appointments with nutritionists and nephrologists, and they have the opportunity to pose the questions because we are all available to answer them. I believe that they have the right monitoring on these issues” [nurse, 38y].
Theme 2: Support needs
This theme gathers the participants' perspectives on the support needs of people undergoing haemodialysis and family caregivers, specifically the need to improve access to available community resources and professional psychological support, and the desire to receive additional emotional and instrumental support from family members.
Easier access to available community resources
All three groups of participants reported that it would be important for individuals with kidney failure and families to have better access to social support services. People undergoing in-centre haemodialysis and caregivers expressed the need for human and institutional assistance to help prepare meals and ensure other amenities (e.g., home support services for household chores, day-to-day care, keep the cared-for person company while the caregiver is at work): “Every day I am weaker. I have my husband, but he can't do it [household chores] alone. We need someone to help us (…)” [person on haemodialysis, 82y]. Family caregivers also described the direct costs of haemodialysis (e.g., transportation to and from the dialysis unit, frequent medical appointments, polypharmacy, dietary requirements) which increased economic hardship and the need for financial support: “We need financial help (…). We spend a lot of money, especially on medication (…)” [spouse, 77y].
Healthcare professionals added that people on dialysis would benefit from more support to prevent isolation and to help manage limited resources (e.g., low retirement income, precarious housing conditions): “(…) They are isolated because they have a chronic disease. In addition, they have few economic resources, they live in precarious houses… Some of these patients do not go out, because they have no social dynamics. (…) From a social point of view, all of this represents an important need” [nurse, 29y].
Improved access to professional psychological support
All three groups of participants stated the importance of improving psychological support services in renal care settings. Individuals undergoing in-centre haemodialysis described a desire to receive psychological support to help them cope with the emotional strains of treatment (e.g., anxiety, anger, sadness, fear of dying, uncertainty about the future, feelings of loss, impaired memory, sleep problems) and its impacts on family life (e.g., role reversal): “Sometimes I cry alone at home. I get out of the ambulance [after dialysis] and my daughter has to hold me and I keep thinking ‘I'm going to die’. (…) When will I be able to support my family again? I started working at the age of nine and now my daughter has to work to provide for our family” [person on haemodialysis, 53y].
Similarly, family caregivers expressed the need to receive psychological support to vent and share negative emotions (e.g., sadness, depression, burden), but also to learn strategies to cope with caregiving demands (e.g., how to emotionally support the cared-for person): “My needs… Psychological support, right? Because we don't have any (…) and I don't know what to do, because I don't know how to help him and how to deal with him (…)” [spouse, 53y].
From the point of view of dialysis care professionals, improved psychological support would be crucial to prevent and manage the psychological distress of people on dialysis and help rebuild personal and family identity after the diagnosis of kidney failure: “They need help to accept their disease and feel that their daily struggle with dialysis is worth it. They need to see themselves beyond this disease and realize that they have not lost their identity. They are not just a patient with a chronic illness, but also a family member, a father, a husband…” [nurse, 36y].
Additional emotional and instrumental support from family members
Both people undergoing in-centre haemodialysis and their family caregivers expressed the need to receive more emotional validation from their spouses and adult children. In particular, some individuals receiving haemodialysis described the need to improve communication with their partners about the impacts of haemodialysis on the couple's sexual intimacy: “To be honest, our sex life was never the same [after haemodialysis initiation]. I tried to talk to her [wife] about this once, but that was it. We never spoke about this again…” [person on haemodialysis, 73y]. In turn, family caregivers mentioned a desire to receive additional help from other family members (e.g., siblings) in managing caregiving tasks, such as ensuring the cared-for person adherence to haemodialysis sessions, dietary and fluid control, and keeping him/her company while the primary caregiver is at work, or in self-care activities (e.g., spending time with their children and spouses, performing leisure activities, resting): “(…) I have a brother, but he doesn't care. What I need is to hear him say ‘go for a walk on Saturday, I'll stay with our father’. (…) Preparing meals, transporting my father to and from dialysis, giving him medication and insulin… I have no one to share these tasks with” [daughter, 42y].
When questioned about people on dialysis' and caregivers' emotional and/or relational needs, healthcare professionals stated that they would benefit from greater family involvement, as the need for more support to manage haemodialysis treatments is commonly expressed. However, communication with families was described as less frequent, which was identified as a barrier to understanding their needs: “We rarely talk to family caregivers and their needs are not very clear to us. I honestly don't know (…)” [nurse, 38y].
Theme 3: Expected barriers to participation in a multifamily group intervention
This theme identifies the participants' perceptions on the barriers expected by people undergoing haemodialysis and family caregivers regarding their participation in a multifamily group intervention in renal care settings, namely concerns about participating in a group format, the availability of the person on dialysis/family caregiver dyad, and impediments related to transport to the intervention site and its associated costs.
Concerns about participating in a group format
Fear of exposing innermost feelings, being judged, or misunderstood, not being able to help someone in need, and/or being contaminated by others' negative experiences and feelings were reported both by people with kidney failure and family caregivers regarding participation in a multifamily group intervention: “Sharing can be positive but… My mom and I have a good way of getting through things, but some people don't. I mean, I fear that we may be influenced by the negative experiences of others…” [daughter, 39y].
In addition, healthcare professionals mentioned that shame and/or difficulty in exposing certain personal and family problems, such as economic struggles and/or intimacy issues, could affect individuals on haemodialysis' and family caregivers' involvement in these initiatives: “They may feel embarrassed talking about their private life in a group, (…) such as sexuality” [nurse, 36y].
Availability of the person on haemodialysis/family caregiver dyad
The difficulty of reconciling the availability of the person with kidney failure and his/her family caregiver due to treatment inflexible schedules and side effects (e.g., post-dialysis fatigue), frequent medical appointments, and work and family responsibilities (e.g., caring for a grandchild) was anticipated by all groups of participants as a potential barrier to participation in a multifamily group intervention: “(…) It's complicated, I help my mother [person on haemodialysis], but I also need time for my husband and my 7-year-old daughter” [daughter, 45y].
Additionally, for healthcare professionals, the willingness of people undergoing haemodialysis and their caregivers to participate in a conjoint initiative could also be affected by relationship dynamics (e.g., presence of conflict, communication patterns): “(…) It depends on the relationship between the patient and the family caregiver. The patient may not feel comfortable expressing his feelings of vulnerability in front of the caregiver and vice-versa” [nurse, 35y].
Travel to the intervention site and its associated costs
Not having transport to the dialysis unit on the days of the intervention and/or the additional financial costs that this may represent for families were identified as possible reasons for not being able to participate in a multifamily group intervention. This barrier was identified in the transcribed interviews of all groups of participants: “I don't drive and neither does my father. I don't have anyone to take us, and we can't afford a taxi for so many trips” [daughter, 59y]; “Traveling to the dialysis unit to participate in the intervention will be the biggest barrier, especially if transportation costs are not guaranteed. (…) I have patients who will not be able to participate” [nephrologist, 64y].
Theme 4: Expected benefits of participating in a multifamily group intervention
This theme covers the participants' viewpoints on the benefits expected by people on haemodialysis and family caregivers regarding their participation in a multifamily group intervention in kidney failure, namely mutual emotional support and validation, and improved coping skills and family involvement.
Mutual emotional validation and support
People undergoing in-centre haemodialysis, family caregivers, and healthcare professionals expected that a family-based group intervention would enable the exchange of concerns and feelings, create opportunities to give and receive emotional support and encouragement, normalize experiences, increase feelings of hope, and strengthen the support network and connection with peers: “I think so [it would be beneficial] because it is important to receive support from other patients. (…) It would be important for us to communicate with others and to hear their families (…)” [person on haemodialysis, 67y]; “(…) Realizing that other families feel the same way they do and receiving this validation and normalization is important.” [nephrologist, 31y].
Improve family coping skills and involvement
All groups of participants anticipated that a multifamily group intervention would help improve personal and family skills to cope with the demands of haemodialysis treatments. For those on haemodialysis, the intervention would help respond to caregivers' willingness to be more involved in disease management: “Nobody talks to him [caregiver] about my disease and I think he would like to talk to a psychologist about what is going on. Being able to be there [intervention] and benefit from that support would be nice for both of us” [person on haemodialysis, 48y]. In turn, family caregivers hoped for the intervention to help them develop skills to cope with caregiving responsibilities and tasks (e.g., deal with the cared-for person's negative feelings), enhance the identification of the cared-for person's healthcare and support needs, and the involvement of the non-nuclear family: “I think this intervention would help increase our [family] understanding of my mother's condition. (…) We need to learn to adapt to her reality and what it demands (…)” [daughter, 39y].
From the healthcare professional's perspective, this initiative would be useful to promote families' sense of a “normal life”, despite dialysis daily requirements (e.g., help demystify travelling while on dialysis, dining out): “I hope that it helps them live life as normal as possible and encourages them to understand that life goes on. (…)” [nephrologist, 64y]. These participants also described family-oriented approaches as opportunities to address relational dynamics and improve family communication: “(…) It can also help to lessen patients' loneliness and helplessness, sometimes due to a lack of understanding from close family members who are unaware of treatment demands” [nurse, 35y].
Theme 5: Preferences for the design of a multifamily group intervention
This theme includes the participants' perspectives on the preferences of people receiving haemodialysis and family caregivers for the design of multifamily group interventions in renal care settings, regarding its content, format, and timing.
Content and format
People undergoing in-centre haemodialysis, family caregivers, and dialysis care professionals mentioned that the intervention should combine different themes such as adherence to nutritional recommendations, care for vascular access, medication intake, information about renal replacement therapies, and strategies to manage the emotional demands of treatments: “Topics… Well, the mindset of people and how to deal with our daily struggles. Many of us are not emotionally prepared for this treatment, but we have to be. We have to accept it, because we have no other choice, and it's hard to live like this” [person on haemodialysis, 51y].
Content related to managing expectations, accepting disease constraints, and setting life goals to help cope with chronic dialysis was also suggested by healthcare professionals for whom the intervention should be interdisciplinary and moderated by a health psychologist: “I think different healthcare professionals should be involved (…) but it would be better to keep the psychologist as a moderator (…)They [person on haemodialysis] also need help finding a reason to continue this treatment. (…) Help establish life goals, within the limitations they have” [nephrologist, 30y].
Family caregivers also suggested that the intervention should be non-exhaustive and delivered creatively to increase participation (e.g., include cooking shows, recipe exchange, educational games, appealing flyers): “This [intervention] needs to be creative and fun. Like, you could show us how to make new recipes. My mother would love it. (…) And create a space for sharing recipes” [daughter, 33y].
Timing of the intervention
All three groups of participants suggested that the intervention should be carried out on weekends or in the late afternoon on days when there is no treatment, to ensure that the person on haemodialysis was not dealing with post-dialysis symptoms (e.g., fatigue) and enable the participation of working family members: “At the end of the day or on the weekends would be the best for me and my dad. (…) He has dialysis on Friday mornings and he gets tired.” [daughter, 24 years old].
DISCUSSION
This study explored the perspectives of people undergoing in-centre haemodialysis, family caregivers, and healthcare professionals about the development and implementation of family-based interventions delivered in a multifamily group format in renal care settings. Overall, this study's findings suggested that participants recognized the potential benefits of this innovative approach. Nonetheless, some barriers were anticipated that may hinder the involvement of the person on dialysis/caregiver dyad.
In the current study, people with kidney failure and family caregivers voiced their preference for an interdisciplinary intervention combining the provision of disease and treatment-related information with skills training to improve the ability to manage haemodialysis treatments. The perception of educational needs varied according to the participants' group, as individuals receiving dialysis were more expressive about their desire to improve knowledge about renal replacement therapies, while family members wished to acquire better clarification on dietary and fluid restrictions, vascular access care, and polypharmacy management. In turn, these aspects were rarely mentioned by healthcare professionals for whom dialysis-related information and educational materials were easily accessible through internet searches and/or direct requests to the dialysis team.
This discrepancy in the participants' perspectives may not only indicate that existing resources are not compatible with the self-management needs of people undergoing haemodialysis and family caregivers (da Silva et al., 2021) but also reflect communication issues between the triad person on dialysis/family/dialysis care team (Boonstra et al., 2022). In this regard, on one hand, there seems to be a tendency for healthcare professionals to overestimate the ease and/or ability of people with kidney failure and their families to pose doubts and express needs; on the other hand, individuals on dialysis and caregivers also wished to increase conversations about the impacts of treatments (e.g., on couples' sexuality). Family systems theoretical models have already highlighted the importance of developing interventions that facilitate functional collaborative interactions with healthcare providers, promote the perception of chronic disease as a “we” challenge rather than an individual problem, and minimize imbalances in family relationships (Rolland, 2019; Walsh, 2016). The improvement of interactions between the aforementioned triad is also in line with previous studies that have explored the challenges of chronic kidney disease self-management (stages 1–4, or pre-dialysis), suggesting the need to consider communication skills training in designing future family-oriented approaches for people on maintenance haemodialysis and their families (Boonstra et al., 2022).
The analysis of the support needs of people undergoing haemodialysis and family caregivers identified their desire to receive more professional practical support (e.g., provided by a social worker to help manage financial constraints and increase access to community resources) as well as psychological support. This should be considered not only in the design of family-based initiatives but also in the review of resource allocation policies in renal care settings, as limited support may increase emotional distress and treatment non-adherence (Seekles et al., 2020). In line with this, nurses and nephrologists from this study stated that it would be beneficial to include psychologists on dialysis teams and reiterated that a family-based interdisciplinary intervention in kidney failure should be moderated by these professionals. The inclusion of health psychologists in renal rehabilitation programs can also help meet people with kidney failure and family caregivers' needs, expectations, and preferences for disease management and, therefore, motivate them to participate in these initiatives. These professionals can help to promote families' psychosocial understanding of haemodialysis, help train coping skills to deal with the physical and emotional impacts of treatments (e.g., altered neurocognitive function, sleep problems, fatigue, pain, caregiver burden, anxiety, anger, depression, fear, uncertainty), set future life goals, and strengthen personal and family identity (Rolland, 2019). These are important targets of health psychology interventions whose benefits are well documented in other clinical settings (e.g., oncology), but which remain underexplored in the context of kidney failure.
Lastly, the findings of this study allowed for the anticipation of some barriers that may hinder the participation of the people on haemodialysis/caregiver dyad in family-oriented interventions in renal care settings. Many families live in areas geographically distant from dialysis units and, therefore, their participation can be hampered by the lack of transport or represent an additional financial burden. Participants were also concerned about the timing of the intervention and the need to reconcile personal and family responsibilities, which suggests that the availability of both members of the dyad can prove to be a challenge. With the inflexible regimen of attendance to in-centre haemodialysis, it is possible that for some families an additional visit to the dialysis unit increases the treatment burden; hence, it is important to adapt the structure and duration of family-based interventions in renal care settings to the limited availability of dyads, ensuring that they are offered at times when they are willing to participate (Taylor et al., 2016). An alternative to minimize these barriers and the impacts of the intervention on (the already disrupted) family routines would be to adapt it to an online format. In this regard, a recently published study has reported that internet-assisted therapy for adults on haemodialysis can increase acceptability, satisfaction, and adherence rates to the intervention (Jakubowski et al., 2020). However, research is needed to understand if online interventions are suitable for family-based interventions in kidney failure (da Silva et al., 2021).
Limitations
Participants were selected based on their willingness to participate in the interviews that may introduce selection and social desirability bias; however, not all families desire the same amount and type of support and, therefore, this increases the likelihood of designing the intervention based on the preferences of those who may benefit most from it. Furthermore, this study did not explore the impacts of comorbidities that are commonly found in individuals with kidney failure (e.g., diabetes, lupus, and cancer), limiting our understanding of the additional needs that may affect disease management. Most people receiving haemodialysis and family caregivers in this study were younger than 75 years old and, therefore, needs and preferences for self- and family-management may differ from those of an older age. Finally, the exploration of self-management needs, preferences, and expectations was contextualized for interventions in a multifamily group and, therefore, some of the current results may be limited to this intervention format. These caveats may limit the transferability of findings.
Implications for practice
Table 3 summarizes the main aspects to consider when designing a family-based self-management intervention in kidney failure. Overall, the findings suggested that the intervention program needs to follow an interdisciplinary approach, combining psychosocial support with an educational component to increase the likelihood of addressing people on haemodialysis' and families' needs, expectations, and preferences for disease management. The educational component needs to include disease and treatment-related information (e.g., about different renal therapies, dietary restrictions, fluid control, vascular access care) while also promoting strategies to manage lifestyle changes, and facilitating access to community resources (e.g., support associations, home support services, and social benefits). In turn, the psychosocial component of the intervention needs to focus on facilitating family management of the impacts and challenges of haemodialysis (e.g., dialysis adverse effects, travelling while on dialysis, and role reversal), improving dyadic communication skills, training emotional management and problem-solving, and the understanding of haemodialysis as a ‘shared experience’. These implications for practice were developed based on the findings of the present study following Corbin and Strauss' Self-management Framework (which includes medical, behavioural, and emotional management), and Lorig and Holman's (2003) considerations for self-management interventions (problem-solving, decision-making, monitoring of symptoms, self-efficacy, resource utilization, partnership with health service providers, and action planning).
| Aspects to include in a family-based self-management intervention in haemodialysis | Intervention goals |
|---|---|
| Specific knowledge about kidney failure and renal replacement therapies | Improve information about:
|
| Clarification on the management of dialysis-related health behaviours |
Expand knowledge on:
Train problem-solving skills to manage dietary and fluid restrictions:
|
| Access to social, healthcare, and community resources | Facilitate information about:
|
| Family and social support |
Train interpersonal communication skills to improve relationships between people on haemodialysis/families/healthcare professionals:
Expand the support network and prevent social isolation:
|
| Coping skills to manage the adverse physical and psychological effects of dialysis |
Promote emotion regulation strategies:
Inform and train compensatory strategies to help manage dialysis adverse effects such as neurocognitive changes, pain, fatigue, and sleep problems. |
| Building the ‘We-experience’ |
Promote psychosocial adjustment to the demands of haemodialysis treatments and its impacts on personal, family, social, and work activities (e.g., travelling while on dialysis, returning or keeping working activities, engaging in hobbies and/or self-care activities, role reversal); Facilitate the definition of challenges in “we” terms, to minimize burden; Establish future life goals to facilitate adjustment to daily struggles; Strengthen a sense of family identity and cohesion to prevent conflict, loneliness, and the erosion of mutual support. |
CONCLUSION
To date, and to the best of our knowledge, this study was the first to simultaneously explore the perspectives of people undergoing in-centre haemodialysis, family caregivers, and healthcare professionals about the development and implementation of family-based interventions in renal care settings. Research is needed to explore alternatives to minimize barriers to participation, facilitate recruitment, and maximize retention and adherence rates, while also addressing families' needs, expected benefits, and preferences for disease management. Future studies are needed to better understand the feasibility, acceptability, and preliminary effects of this innovative approach in kidney failure.
AUTHOR CONTRIBUTIONS
Helena Sousa: Conceptualization; data collection; data curation; writing – original draft; formal analysis; funding acquisition. Oscar Ribeiro: Conceptualization; formal analysis; writing – review and editing; supervision. Alan J. Christensen: Conceptualization; writing – review and editing; supervision. Daniela Figueiredo: Conceptualization; formal analysis; writing – review and editing; supervision; funding acquisition.
ACKNOWLEDGEMENTS
The authors would like to thank the head nurses of the dialysis units where the recruitment took place and the participants (people on haemodialysis, family members, and dialysis care professionals) for their time and availability to share their experiences with us.
FUNDING INFORMATION
This work was supported by the project POCI-01-0145-FEDER-030228, funded by FEDER, through COMPETE2020- Programa Operacional Competitividade e Internacionalização (POCI), and by national funds (OE), through FCT/MCTES. Additionally, Helena Sousa has a PhD grant scholarship (reference number DFA/BD/4821/2020) financed by FCT (Fundação para a Ciência e Tecnologia) through FSE (Fundo Social Europeu).
CONFLICT OF INTEREST STATEMENT
The authors report there are no competing interests to declare.
Open Research
DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available from the corresponding author, [HS], upon reasonable request.
