Background
Who are family caregivers in the contemporary healthcare?
Why does engaging family caregivers matter?
The lack of a psycho-social conceptualization of family caregiver engagement
Methods
Stage 1. Towards a qualitative conceptualization of family caregiver engagement in healthcare: the caregiving Health engagement model
Sampling
Recruitment procedure
Data collection
Qualitative thematic analysis
Stage 2. Generation and psychometric evaluation of the caregiving Health engagement scale (CHE-s)
Item generation, content and face validity assessment
Sampling and recruitment procedures
Data collection
Concurrent measures
- Caregiver Burden Inventory (CBI). It is a multidimensional scale proposed to evaluate the impact of burden on different aspects of a caregiver’s life, reflecting various areas of the caregiver’s well-being and function which may be differentially affected by the relative’s medical condition [55]. Although the original scale proposes five dimensions, we identified four groups or factors, as suggested by Marvardi and colleagues [79]. The four burden dimensions are: time-dependent burden (T/dep-B, α = 0.92), evaluating stress caused by restriction of one’s personal time; psychophysical burden (Psy-Phys-B, α = 0.95), referring to a sense of failure regarding one’s hopes and physical stress; emotional burden (Emot-B, α = 0.74), concerning to any embarrassment or feeling of shame caused by the patient; and social burden (Soc-B, α = 0.94), caused by conflicts of roles concerning one’s job or family. In the present study, an Italian translation was adopted.
- Revised Scale for Caregiving Self-Efficacy (SE). Self-efficacy has been conceptualized as a person’s belief about her or his ability to organize and execute courses of action to manage given situations [80]. When applied to the experiences of caregivers, it can explain family member’s ability to cope with chronic demands and challenges of caregiving. Developed by Steffen and colleagues [59], the 15-item Revised Scale for Caregiving Self-Efficacy (SE) is an assessment tool in clinical and research settings. It consists of three subscales which measures three domains of caregiving self-efficacy: SE-Obtaining respite (α = 0.93), which comprises behaviors that caregivers would initiate or participate in order to reduce their own distress and enhance well-being; SE-Controlling upsetting thoughts (α = 0.94), which is the ability to confront and regulate distressing and unhelpful thoughts about caregiving; SE-Responding to Disruptive Patient Behaviors (α = 0.95), which is the perceived capability to manage difficult patient behaviors. In the present study, an Italian translation was adopted.
Statistical analysis
Results
Demographic variables (caregivers) | Stage 1 (N = 32) % (N) | Stage 2 (N = 198) % (N) | ||
---|---|---|---|---|
Mean age (s.d.) | 62.9 (6.2) | 53.3 (12.5) | ||
Gender (% females) | 58 (19) | 76.5 (151) | ||
Relationship with the patient (%) | ||||
Parent | 3.1 (1) | 56.1 (111) | ||
Son/daughter | 12.5 (4) | 13.6 (27) | ||
Spouse/partner | 84.4 (27) | 24.7 (49) | ||
Other | – | 5.6 (11) | ||
Clinical variables (patient) | ||||
Mean years from diagnosis (s.d.) | 4.9 (5.3) | 11.4 (8.7) | ||
Patient’s main disease (%) | ||||
Pulmonary disease | 21.9 (7) | 38.4 (76) | ||
Alzheimer’s disease | 3.1 (1) | 9.1 (18) | ||
Diabetes | 34.4 (11) | 7.1 (14) | ||
Cystic fibrosis | – | 7.1 (14) | ||
Cardiovascular disease | 28.0 (9) | 4.5 (9) | ||
Rheumatoid arthritis | – | 5.1 (10) | ||
Cancer | 6.3 (2) | 4.5 (9) | ||
Dementia | 6.3 (2) | 3.5 (7) | ||
Connective tissue disease | – | 2.5 (5) | ||
Multiple sclerosis | – | 1.5 (3) | ||
Vasculitis | – | 1.5 (3) | ||
Other (various) | – | 15.2 (30) |
Stage 1. Conceptualizing family caregiver engagement in healthcare: the Caregiving Health Engagement Model
Position 1: denial
“I was not able to manage the shock” (wife, 47 years old)
“I can’t believe what happened…I still struggle in accepting that”(husband, 62 years old)
“Sometimes, I just want to run away”(son, 35 years old)
Caregivers in this position often feel unable to actively play the caregiving function and to assume their loved one’s care responsibility. Moreover, they expect to delegate the therapeutic decisions about their loved one to the clinical staff. Pragmatic support is transferred to other family member or to professional caregivers or in-home nurses. This not only means a delegation of pragmatic aspects related to caring but also a psychological avoidance of the caregiving role assumption. The main need of caregivers in this position is to be emotionally supported in order to elaborate the new role identity and to be helped in acquiring pragmatic and organizational skills to effectively manage the caregiving tasks.“This is not my duty. This is not my role”(wife, 54 years old)
Position 2: hyper-activation
“I found it very frightening at the start, very frightening. I couldn’t sleep”. (wife, 61 years old)
“Whenever I’ve been out and I am not there for him (the husband) the first thing I do is to look on the telephone, see if there’s any messages. I am always on alert”. (wife, 66 years old)
As anticipated, the caring role is in this position responsibly assumed, but carried out in an overactive mode. The function of caregiving becomes all-encompassing and “draining” the physical and mental energies of the person.“I'm a dressmaker, I'm not a doctor. I do not know how to help my husband and I rely on doctors”(wife, 70 years old)
Position 3. Drowning
“Taking care of my mum is a daily routine. This is currently my job and I feel ok with that. However I experience some troubles when I have to take some day off with my family or I have to go abroad for work. These episodes are really difficult to be managed”. (son, 37 years old)
“Since my wife has become ill, my life is no longer life” (Husband, 64 years old)
“I lost my freedom” (Parent, 39 years old)
“You feel conditioned for life” (Son, 38 years old)
“I was no longer his wife. I was his nurse” (Wife, 64 years old)
“I am his point of reference. only if I am with him, he feels calm” (Wife, 71 years old)
“I gave up everything. I do not know who I am anymore (Son, 56 years old)
Position 4. Balance
“I can’t let myself go in any way because it wouldn’t be right”. (Husband, 70 years old)
“My husband did everything at home. I had to change skin and reinvent my life” (wife, 72 years old)
“We slowly returned to being a husband and wife” (wife, 76 years old)
Stage 2. Generation and psychometric evaluation of the caregiver Health engagement scale (CHE-s)
“Denial” | “Hyper-activation” | “Drowning” | “Balance” | |
---|---|---|---|---|
CHE_1 | I feel in blackout | I feel alert | I am aware | I’m positive |
CHE_2 | I feel lost | I’m in alarm | I am conscious | I feel serene |
CHE_3 | I feel overwhelmed by emotions | I’m anxious every time a new symptom appears | I feel to have adjusted to my loved one’s illness | I have a sense of consistency and continuity in my life despite his/her illness |
CHE_4 | I feel totally crushed by the disease | I distress a lot when a new symptom appears | Overall I feel I have accepted his/her illness | I can make sense of my life despite his/her illness |
CHE_5 | I cannot understand what my loved one would need to get better | I understand what my loved one would need, but I cannot help him/her | I understand what my loved one would need and sometimes I can help him/her | I can anticipate the needs of my loved one and help him/her effectively |
CHE_6 | Right now I do not feel able to assist my loved one alone | Assisting my loved one absorbs my time and energy | I found an acceptable balance between the need for assistance of my loved-one and my daily activities | I feel able to manage my life projects and the assistance to my loved one in a renewed normality |
CHE_7 | I delegate to the health professionals the decisions related to the care of my loved one | I need constant confirmations by the health providers to make decisions about my loved one’s care | I can recognize when it is necessary to contact the health professionals to make a decision about his/her treatment | I actively collaborate with my loved one’s health professionals |
CHE-s item | Rank range | Min | Max | Median | Shannon entropy |
---|---|---|---|---|---|
CHE_1 | 1–4 | 1 | 4 | 3 | 0.93 |
CHE_2 | 1–4 | 1 | 4 | 3 | 0.90 |
CHE_3 | 1–4 | 1 | 4 | 3 | 0.98 |
CHE_4 | 1–4 | 1 | 4 | 4 | 0.94 |
CHE_5 | 1–4 | 2 | 4 | 4 | 0.87 |
CHE_6 | 1–4 | 2 | 4 | 4 | 0.94 |
CHE_7 | 1–4 | 1 | 4 | 3 | 0.90 |
CHE_1 | CHE_2 | CHE_3 | CHE_4 | CHE_5 | CHE_6 | CHE_7 | |
---|---|---|---|---|---|---|---|
CHE_1 | – | 0.86 | 0.75 | 0.67 | 0.68 | 0.65 | 0.54 |
CHE_2 | – | 0.78 | 0.72 | 0.66 | 0.65 | 0.59 | |
CHE_3 | – | 0.78 | 0.66 | 0.7 | 0.52 | ||
CHE_4 | – | 0.63 | 0.68 | 0.58 | |||
CHE_5 | – | 0.64 | 0.62 | ||||
CHE_6 | – | 0.55 | |||||
CHE_7 | – |
Exploratory categorical principal component analysis
CHE-s item | One factor solution |
---|---|
CHE_1 | 0.86 |
CHE_2 | 0.86 |
CHE_3 | 0.86 |
CHE_4 | 0.85 |
CHE_5 | 0.79 |
CHE_6 | 0.79 |
CHE_7 | 0.70 |
Confirmatory factorial analysis
Rasch model
CHE item | Measure (logits) | SE | Infit MNSQ | Outfit MNSQ |
---|---|---|---|---|
CHE_1 | 1.213 | 0.3 | 0.751 | 0.775 |
CHE_2 | 1.076 | 0.3 | 0.671 | 0.663 |
CHE_3 | 1.077 | 0.3 | 0.736 | 0.768 |
CHE_4 | 0.886 | 0.3 | 0.815 | 0.813 |
CHE_5 | 0.330 | 0.4 | 0.930 | 0.963 |
CHE_6 | 0.574 | 0.4 | 1.004 | 0.968 |
CHE_7 | 0.409 | 0.3 | 1.274 | 1.240 |